We've survived our first night alone with Brynn. She has actually been a really good baby and I didn't feel nearly as overwhelmed this morning as I did the first morning after we brought Riley home. She has to eat every 3 hours which means I have to get up and pump before she's ready to eat. She is also receiving eye drops 4 times a day for her eye infection, vitamins twice a day, and iron supplements twice a day. I'm working on a chart to try to help me keep it all straight and make sure I don't screw up the "when" and "how much" of all her medications. She's been a trooper on her bottles since our little set-back yesterday evening. Blaine has been worried that her breathing was congested so they also gave us some saline drops for her nose and they did a viral culture to make sure she hasn't caught some bug. The results won't be in for 24 hours (around 9:00 AM tomorrow) so we're hoping the results are negative. If not, it's very unlikely that they'll let us come home. But, she's not showing any signs of sickness and her lungs look good so it's really a precautionary test.
I'm feeling more confident now that I am getting to assume full-time care of her. I know I've done all this before with Riley, but it's amazing how much you forget. One thing that was quickly familiar was the feeling of sleep deprivation. In a weird way, though, it was somewhat welcome because it's such a "normal" part of having a baby.
Cross your fingers and toes that all goes well tonight and we'll be heading home tomorrow!
Friday, October 31, 2008
Thursday, October 30, 2008
Day 47
It's official--she's really our baby!! We had a busy day getting ready to do the Care By Parent program. My parents got to our house late last night and left early this morning with Riley. Brynn had to have a car seat test today which meant strapping her into a car seat for 90 minutes to see if she could tolerate being upright for that long. Although she passed the test, the administrator is actually recommending that we bring her home in what's called a "car bed" because the car seat did not fit well. So, tomorrow she'll have to be fitted for the car bed and we'll have to make the arrangements to "lease" the apparatus for the time-being. I was really comical to see her strapped into a car seat. We had to roll up blankets to place on either side of her just so she could stay upright. She looked like a baby doll that Riley would put in a car seat while pretending. She also had to have another blood transfusion today which took 4 hours and required yet another IV insertion and removal. Her doctors said they wanted to send her home "tanked up."
Finally, at 6:00 PM, the nurse wheeled her into our room and I officially took over the role of "parent." Blaine had to teach a night class until 8:00 so he didn't get to join me until almost 9:00. When she got here at 6:00, the lactation consultant came in the room with me and observed a breastfeeding session. She brought a special scale that takes a weight prior to nursing and after nursing to determine exactly how much milk the baby consumed. Brynn latched on like a champ and nursed for 5 minutes. Her "pre" weight was 1862 grams...and her "post" weight was 1862 grams....meaning she got absolutely zippo. Not good for my breastfeeding self-esteem, but good information to know! So far, we've given her 2 bottles on our own and she's only taken 25 of 35 ml each time. Blaine is already getting anxious and I'm trying to remain calm, assuming that she'll wake up and eat well the next time. I'd already forgotten how long it takes to feed a newborn. It's taking us an hour to feed her and get her in bed and by that time I will only have 1 1/2 hours before I need to pump for the next feeding. Not bad during the day, but the nights will be tough. So, we're finally feeling like we have a real newborn--the good, the bad, and the ugly!
Finally, at 6:00 PM, the nurse wheeled her into our room and I officially took over the role of "parent." Blaine had to teach a night class until 8:00 so he didn't get to join me until almost 9:00. When she got here at 6:00, the lactation consultant came in the room with me and observed a breastfeeding session. She brought a special scale that takes a weight prior to nursing and after nursing to determine exactly how much milk the baby consumed. Brynn latched on like a champ and nursed for 5 minutes. Her "pre" weight was 1862 grams...and her "post" weight was 1862 grams....meaning she got absolutely zippo. Not good for my breastfeeding self-esteem, but good information to know! So far, we've given her 2 bottles on our own and she's only taken 25 of 35 ml each time. Blaine is already getting anxious and I'm trying to remain calm, assuming that she'll wake up and eat well the next time. I'd already forgotten how long it takes to feed a newborn. It's taking us an hour to feed her and get her in bed and by that time I will only have 1 1/2 hours before I need to pump for the next feeding. Not bad during the day, but the nights will be tough. So, we're finally feeling like we have a real newborn--the good, the bad, and the ugly!
Wednesday, October 29, 2008
Day 46
I had my 6 week post-partum doctor's appointment today which managed to make me miss the 9:00 AM feeding and part of the noon feeding. When I finally arrived on time for her 3:00 PM feeding, her nurse told me that Dr. Slack had written in the orders to be prepared to go to Care By Parent tomorrow evening. Even though we knew this was coming soon, I still felt a little shocked. She gained less than an ounce last night so she is still at 3 lb 10 oz and I guess I just didn't think we'd be heading home under 4 lbs. So, the plan as of this evening is to go to Care By Parent (the program where you sleep with the baby in a hospital room across the hall from the NICU) for Thursday and Friday nights and then come home sometime on Saturday. Is this really happening??!! Blaine and I have been scrambling since 4:00 to get all the last minute things done. Thankfully, my parents are coming at the drop of a hat to get Riley...the dogs are going to the kennel...Blaine's still hanging the drapes in the nursery now and it's almost midnight! It feels like I am schedule for an induction tomorrow, like we somehow get to "redo" the whole birthing thing and spend a few nights in the hospital and then bring an actual baby home with us.
The nurses have been giving me instructions on how to give Brynn her iron supplements (so that she can improve her ability to make red blood cells), how to mix her formula caloric supplement with the breastmilk, etc. I have been trying to slowly wean myself from looking at her monitors to make sure she's doing OK when she eats or I'm holding her. It will be hard not to have that reassurance but I know we'll become more confident as the days go by.
I'm off to pack my "hospital" bag and pack a bag for Brynn. I guess the best part is that I don't have to worry about going through labor and delivery to get the prize at the end...I've already done that part! It will be a lot easier on me in the hospital this time--this is what it must feel like to be the father! I'll bring my computer and keep everyone posted.
The nurses have been giving me instructions on how to give Brynn her iron supplements (so that she can improve her ability to make red blood cells), how to mix her formula caloric supplement with the breastmilk, etc. I have been trying to slowly wean myself from looking at her monitors to make sure she's doing OK when she eats or I'm holding her. It will be hard not to have that reassurance but I know we'll become more confident as the days go by.
I'm off to pack my "hospital" bag and pack a bag for Brynn. I guess the best part is that I don't have to worry about going through labor and delivery to get the prize at the end...I've already done that part! It will be a lot easier on me in the hospital this time--this is what it must feel like to be the father! I'll bring my computer and keep everyone posted.
Tuesday, October 28, 2008
Day 45
The "discharge" talk has continued today...the nurses have even started squirreling away the formula we will need at home to add to the breastmilk Brynn gets. I've learned so much about feeding and infant nutrition these days that I will have lots of interesting things to talk about at parties from now on. For example, I now know that breastmilk has 20 calories per ounce. They want Brynn getting 26 calories per ounce of food so we have to mix in formula to "soup" it up a bit. They are also pretty sure that she is going to need to come home in what they call a "car bed" rather than a normal infant car seat because she is too small. The nurse estimated that we will be in Care by Parent sometime this weekend and that she is likely to discharge (if things continue to go well) be early next week. YEAH!!!....and YIKES!!! It's odd to have such competing emotions of extreme excitement and extreme anxiety.
Brynn's weight was up to 3 lbs 10 oz last night. She hadn't gotten weighed yet when I was there tonight, so I'll have to wait until tomorrow for that news. She started having some trouble with spitting up today. One of her night nurses in the last few nights suggested that she be allowed to eat more than her alloted milk because she thought she might still be hungry at times. So, they had begun to put somewhere between 40 and 45 ml in her bottle when she is technically only supposed to need 33 ml per feed. Well, she has often been taking around 40 ml, but she started spitting up as well. So, I tried suggesting that maybe she is being overfed. The doctor evidently agreed because when they called her to let her know about the spit-up, she requested that they reduce her feeds back to 35 ml. This might seem ridiculous to be discussing such small quantities, but if she continues to spit up so much they are going to put her on an anti-nausea medication.
We'll keep you posted on weight, spit-up, and discharge!
Brynn's weight was up to 3 lbs 10 oz last night. She hadn't gotten weighed yet when I was there tonight, so I'll have to wait until tomorrow for that news. She started having some trouble with spitting up today. One of her night nurses in the last few nights suggested that she be allowed to eat more than her alloted milk because she thought she might still be hungry at times. So, they had begun to put somewhere between 40 and 45 ml in her bottle when she is technically only supposed to need 33 ml per feed. Well, she has often been taking around 40 ml, but she started spitting up as well. So, I tried suggesting that maybe she is being overfed. The doctor evidently agreed because when they called her to let her know about the spit-up, she requested that they reduce her feeds back to 35 ml. This might seem ridiculous to be discussing such small quantities, but if she continues to spit up so much they are going to put her on an anti-nausea medication.
We'll keep you posted on weight, spit-up, and discharge!
Monday, October 27, 2008
Day 44
Brynn decided that she wants to come home last night and went ahead and pulled out her own feeding tube! The nurses decided to go ahead and give her a try without her tube in and see how she does. If she is able to eat at least 30 ml at each feeding for several days (and continue gaining weight) then she is going to be coming home really soon. The other big news of the day was that she was moved out of her isolette into a "big girl bed" today. She is now in one of the open air beds that typical newborns are placed in at the hospital. She will have to prove that she can maintain her own temperature outside of her isolette. These are the last two steps among the many steps she had to achieve before coming home. It really seems as if we are going to be in the Care by Parent rooms really soon. Once again we are scrambling to get last minute things ready at home. We realized that we haven't even gotten the infant car seat out of the garage and cleaned up, and we don't even have a single bottle in the whole house! You'd think after 44 days we'd definitely be ready, but I think we haven't wanted to do all the final preparations because it might "jinx" us or something. We're heading off for her 9:00 PM feeding while Chelsea stays here with Riley for the evening. Let's hope there's good news about her last feeding!
Sunday, October 26, 2008
Day 43
Brynn weighed in at 3 lb 9 oz last night. I can't believe we're about to start counting down until the 4 lb mark! She is doing really well and we keep holding our breath afraid that things are too good to be true right now. Having said that, I am a little concerned that she might be getting some sort of cold. Her left eye has been "gooey" for days but it was almost sealed shut this afternoon with a lot of yellowish discharge. I also thought she sounded a bit congested when breathing out of her nose. Let's just hope this is all a case of severe parental paranoia, but any sign of infection is so worrisome to us right now.
The NICU was actually a really rough place to be today. We have become "NICU friends" with a couple who gave birth to identical twins with twin-to-twin transfusion at 29 weeks. One of the twin boys (Caleb) is in an isolette next to Brynn's while the other twin (Luke) is in an isolation room. Calbe has been progressing similarly to Brynn although he is still 2 weeks behind her. Luke, however, has struggled with being on a respirator and having a serious brain bleed. Evidently, last night, Luke's condition worsened and he was gone this morning for more tests. When he arrived back, I was sitting with Brynn and his parents at our isolettes. After about 10 minutes the nurses for Luke started yelling for a doctor because Luke had become "extubated" meaning he was no longer breathing on the respirator. I sat for about 5 minutes watching nurses and the doctor work to resuscitate little Luke in front of his parents. I couldn't take it anymore at that point and felt like his parents surely needed privacy so I left the unit. I later came back to find out that they were able to stabilize him but he suffered from several seizures during the process. I can't seem to get the images out of my mind all day and I keep thinking that it could so easily have been Brynn in that situation. I am totally humbled by the grace of God in our lives right now, while I am praying with all my heart for Luke and his family.
The NICU was actually a really rough place to be today. We have become "NICU friends" with a couple who gave birth to identical twins with twin-to-twin transfusion at 29 weeks. One of the twin boys (Caleb) is in an isolette next to Brynn's while the other twin (Luke) is in an isolation room. Calbe has been progressing similarly to Brynn although he is still 2 weeks behind her. Luke, however, has struggled with being on a respirator and having a serious brain bleed. Evidently, last night, Luke's condition worsened and he was gone this morning for more tests. When he arrived back, I was sitting with Brynn and his parents at our isolettes. After about 10 minutes the nurses for Luke started yelling for a doctor because Luke had become "extubated" meaning he was no longer breathing on the respirator. I sat for about 5 minutes watching nurses and the doctor work to resuscitate little Luke in front of his parents. I couldn't take it anymore at that point and felt like his parents surely needed privacy so I left the unit. I later came back to find out that they were able to stabilize him but he suffered from several seizures during the process. I can't seem to get the images out of my mind all day and I keep thinking that it could so easily have been Brynn in that situation. I am totally humbled by the grace of God in our lives right now, while I am praying with all my heart for Luke and his family.
Saturday, October 25, 2008
Day 42
Another day of weight gain! She weighed in at 3 lb 7 oz last night...almost up to the 3 1/2 pound mark. She accomplished another first today--she has eaten 4 full bottles in a row and then nursed for 10 minutes during the last feeding. The head neonatologist stopped by today to tell me how well Brynn is doing. It's strange, but you still get that little feeling of pride whenever someone tells you your kid is doing something good...even if it is just gaining weight and eating bottles! She told me that they don't usually send babies home until they reach 4 lbs but I was actually hopeful after talking to her that once again we might make it home before our due date. So, the roller coaster continues.
Friday, October 24, 2008
Day 41
Brynn gained another ounce and weighed in at 3 lbs 7 oz tonight. She was evaluated by the occupational therapist, Ashley, for the second time today. Ashley said that she is doing well but is working hard to transition from an "immature" sucking pattern to a more "mature" pattern. We both really like and respect Ashley so I decided to pose the "when do you think we'll go home" question to her. Lately we've gotten so many different estimates that I wanted to hear an opinion from the expert on feeding since "feeding and growing" are now our biggest goals. Unfortunately, Ashley says that she still thinks our due date is a good estimate of when she'll be ready to go home. Of course, all along I had been telling myself that we'll get to have her home by Thanksgiving, but I let my hopes get up too much with all the hype in the last week about getting to go home earlier than expected. We are still 4 weeks from our due date and now that seems like a really long time...28 more days...112 more visits to the hospital...OK, I better stop crunching numbers.
Brynn's night nurse tonight got her dressed up in her new dress from Nana (Blaine's mother). She even set up a little "photo op" while she weighed her so I snapped lots of quick pics and posted a few here tonight. The hat showed up on top of Brynn's isolette with a little tag saying that it was hand-made by a certain group. It is too cute, and we were shocked when it was actually too small. I think that's the first thing that has ever been too small for her!
Brynn's night nurse tonight got her dressed up in her new dress from Nana (Blaine's mother). She even set up a little "photo op" while she weighed her so I snapped lots of quick pics and posted a few here tonight. The hat showed up on top of Brynn's isolette with a little tag saying that it was hand-made by a certain group. It is too cute, and we were shocked when it was actually too small. I think that's the first thing that has ever been too small for her!
Thursday, October 23, 2008
Day 40
It's hard to believe that Brynn has been in the NICU for 40 days now! As of today, she is 36 weeks gestational age--the same age that Riley was born. Most babies born at 36 weeks don't have any problems and go home at the same time as full term babies. Brynn had another good weight gain last night (up to 3 lb 4 oz) and then I was there for her to be weighed tonight and she gained again up to 3 lb 6 oz. She is still getting 4 bottles a day and we are hoping the doctors will allow her to start getting bottles anytime she is alert and ready.
I got to attend my first NICU Family Support Group tonight. Blaine usually teaches on Thursday nights so I have to stay home with Riley. He is on fall holiday today and tomorrow so I took the opportunity to attend the Thursday night support group. Unfortunately, I walked into the group and they told me that they were about to show a video that some parents brought in of their twin daughters who had just passed away. These poor parents had twin girls born at 24 weeks. One of the twins died last week after a month and the other twin died last night. The parents had been attending family group the whole month and brought the video into the group tonight. So, I got to make my family group debut by watching an extremely traumatizing video and ending up in tears. Of course, you could never turn these parents away who are wanting to grieve with the people who had been supporting them...but it was particularly traumatizing for all the other parents in the room. I could only think how thankful I was that I didn't attend this particular group during Brynn's NEC scare and infection days. I don't actually think I could have handled it at that point. While 40 days in the NICU might have once seemed like my worst nightmare, tonight I felt like one of the luckiest parents on the planet.
I got to attend my first NICU Family Support Group tonight. Blaine usually teaches on Thursday nights so I have to stay home with Riley. He is on fall holiday today and tomorrow so I took the opportunity to attend the Thursday night support group. Unfortunately, I walked into the group and they told me that they were about to show a video that some parents brought in of their twin daughters who had just passed away. These poor parents had twin girls born at 24 weeks. One of the twins died last week after a month and the other twin died last night. The parents had been attending family group the whole month and brought the video into the group tonight. So, I got to make my family group debut by watching an extremely traumatizing video and ending up in tears. Of course, you could never turn these parents away who are wanting to grieve with the people who had been supporting them...but it was particularly traumatizing for all the other parents in the room. I could only think how thankful I was that I didn't attend this particular group during Brynn's NEC scare and infection days. I don't actually think I could have handled it at that point. While 40 days in the NICU might have once seemed like my worst nightmare, tonight I felt like one of the luckiest parents on the planet.
Wednesday, October 22, 2008
Day 39
Feeding and growing...those are Brynn's goals these days. We finally posted another weight gain and she weighed in last night at 3 lbs 3 oz. She took 3 of 4 full bottles today but fell asleep while Blaine was feeding her tonight. When I got there this afternoon, the nurse met me at the door to inform me that they had changed her feeding times...again. Each nurse usually has 3 babies who each eat on alternate hours for 3 hours. When the babies get switched to a new "team" sometimes a baby has to change feeding schedule so that the nurse can accommodate the 3 different babies. While I totally understand the why, it's still hard to cope with sudden schedule changes. Today's change was the worse really because she would be fed at 5:00 (when I pick up Riley), 8:00 (Riley's bed time), and 11:00 (too late to get a sitter). One of my "new favorite" nurses came on at 3:00 PM and new that I was upset about the change and the number of feedings I would miss. So, she took it upon herself to rework the schedule so that we got back to our old schedule by tonight.
I really just can't say enough about how much we appreciate the nurses and doctors in the NICU. These are truly amazing individuals who clearly love their jobs and the babies they care for. So many times I have watched a nurse working with another baby whose parents are not around. Without fail, the nurses treat the babies with love and tenderness and speak to them with the exact tone I would want used with my baby.
All in all, if the only stressor of the day was a 1-hour change in feeding schedules, that's a pretty darn good day in the NICU.
I really just can't say enough about how much we appreciate the nurses and doctors in the NICU. These are truly amazing individuals who clearly love their jobs and the babies they care for. So many times I have watched a nurse working with another baby whose parents are not around. Without fail, the nurses treat the babies with love and tenderness and speak to them with the exact tone I would want used with my baby.
All in all, if the only stressor of the day was a 1-hour change in feeding schedules, that's a pretty darn good day in the NICU.
Tuesday, October 21, 2008
Day 38
Well, it seems that our nurse yesterday was a little overzealous. Late last night and most of today, Brynn has been extremely sleepy indicating that she got a little too worn out with all the feedings yesterday. She has also stayed at 3 lb 1 oz now for 3 days which indicates that she is having to burn too many calories trying to bottle feed. So, Dr. Vish is now allowing a maximum of 4 bottle feeds a day for a while to see if she can get back on track with her weight gain. So, going home in 10 days seemed a bit too good to be true...and it probably was. But, we aren't really disappointed since she continues to do amazingly well. Really, we can't wait to have her home but we don't want her home a day before she's really ready.
All the talk about coming home has made us realize that we have a limited amount of time to get everything ready. All of the sudden, it feels like I am really still pregnant and we have a due date coming up soon. We've been having that feeling of "we're going to have a baby in X weeks." I'm also coming to realize that I am going to be pretty much homebound once Brynn does come home. Because she is a premie, she doesn't need to be around many people or out in stores or public places. We are concerned enough about the germs Riley will be bringing home from preschool. A nurse also suggested that we try to maintain our house temperature around 75 degrees when Brynn is home. That would be great in the summer, but for those of you who have seen our house, it will be difficult to heat our "glass" house that well during the winter. On top of that, we have also been cautioned about using our fireplace this winter because it can be a lung irritant. So Brynn may be spending a lot of time in her nursery with a space heater going. She will have to be followed by her pediatrician very closely until the age of 2. This means that when I do get out of the house, it will probably be to take her to the doctor's office--not exactly one of the most germ-free places. I think we've been so focused on her NICU stay that we hadn't really started to think about all the other implications for our lives once she comes home. Of course, foregoing a few fires and Target trips will be worth it to have her healthy and home.
All the talk about coming home has made us realize that we have a limited amount of time to get everything ready. All of the sudden, it feels like I am really still pregnant and we have a due date coming up soon. We've been having that feeling of "we're going to have a baby in X weeks." I'm also coming to realize that I am going to be pretty much homebound once Brynn does come home. Because she is a premie, she doesn't need to be around many people or out in stores or public places. We are concerned enough about the germs Riley will be bringing home from preschool. A nurse also suggested that we try to maintain our house temperature around 75 degrees when Brynn is home. That would be great in the summer, but for those of you who have seen our house, it will be difficult to heat our "glass" house that well during the winter. On top of that, we have also been cautioned about using our fireplace this winter because it can be a lung irritant. So Brynn may be spending a lot of time in her nursery with a space heater going. She will have to be followed by her pediatrician very closely until the age of 2. This means that when I do get out of the house, it will probably be to take her to the doctor's office--not exactly one of the most germ-free places. I think we've been so focused on her NICU stay that we hadn't really started to think about all the other implications for our lives once she comes home. Of course, foregoing a few fires and Target trips will be worth it to have her healthy and home.
Monday, October 20, 2008
Day 37
The good news just keeps on rolling in. Today's nurse (another new face!) estimated that Brynn would be home in 10 days or less!!! She has been eating at least 5 full bottles out of 7 feedings a day. The nurse asked the doctors to calculate a "minimum" feeding amount from her bottles before she has to be tube-fed. When she meets all the minimums in a 24-48 hour period, then they will be removing her feeding tube. They have even started giving us some discharge instructions bit by bit. Overall, it is amazing news but also very overwhelming. We had in our heads that we'd have her home around Thanksgiving--and that was if we were really lucky. She still weighs on 3 lb 1 oz. so it's hard to imagine having her at home.
One of the best programs in the NICU is called "Care by Parent." When your baby is ready to discharge, they have rooms across the hall from the NICU where you can stay overnight for 1-2 nights with your baby. We'll be able to "pretend" we're at home with Brynn while having the NICU literally right next door. Blaine is particularly happy about the extra support as he joked with our nurse today that he was planning on buying a heartrate/respiratory rate monitor like she uses in the NICU on ebay for home use (at least I hope he's joking!).
We are heading out for her 10:00 PM feeding tonight, but I thought I'd go ahead and post now rather than at midnight when we finally make it home. I'll report on tonight's activities in tomorrow's update. Until then, grow Brynn grow.
One of the best programs in the NICU is called "Care by Parent." When your baby is ready to discharge, they have rooms across the hall from the NICU where you can stay overnight for 1-2 nights with your baby. We'll be able to "pretend" we're at home with Brynn while having the NICU literally right next door. Blaine is particularly happy about the extra support as he joked with our nurse today that he was planning on buying a heartrate/respiratory rate monitor like she uses in the NICU on ebay for home use (at least I hope he's joking!).
We are heading out for her 10:00 PM feeding tonight, but I thought I'd go ahead and post now rather than at midnight when we finally make it home. I'll report on tonight's activities in tomorrow's update. Until then, grow Brynn grow.
Sunday, October 19, 2008
Day 36
Today was the day to start working toward breastfeeding with Brynn. I was actually a bit nervous when we got there this morning--I guess because I felt the need to "perform" myself somehow. Our expectations (and those of the nurse and doctors) were really low. But, true to her "feisty" disposition, she surprised us all. After a little coaxing, she latched on and actually nursed like a champ for 15 whole minutes. The nurse was so excited that she left in the middle of the feeding to run and tell the doctor what was happening. I teared up but was able to keep from crying all over Brynn's poor little head. The nurse even said that she had teared up a bit. The doctor then approved an increase in breastfeeding from once to twice a day. When I went back that afternoon, I was getting stopped by nurses left and right telling me that they had heard about Brynn's breastfeeding success...she was clearly the talk of the unit! The nurse also continued to get my hopes up about an earlier discharge than expected, saying that she wouldn't be surprised if she went home around 38 weeks gestation (which is only 2 1/2 weeks away!!).
Holly and Lyle were a tremendous help today by taking Riley to the zoo and out for pizza so that we could get things done at the hospital and at home. While doing a load of laundry between hospital visits, I actually caught myself smiling for no good reason. I had to stop folding for a moment to actually put my finger on why my mood was so good. I finally decided that I was having a moment of "contentment." I can imagine that depression is a pretty common companion in these types of situations, but I can't say that I've felt really depressed so far. But, what has been constant is a feeling of discontentment. I never feel really settled and I constantly feel as if I am missing a part of myself. I wonder if this is what it will feel like when Riley and Brynn grow up and leave our house...but I am guessing that will seem "right" whereas there is nothing "right" about this separation. It was just a temporary contentment today, but it definitely felt like I could see a light at the end of the tunnel.
Holly and Lyle were a tremendous help today by taking Riley to the zoo and out for pizza so that we could get things done at the hospital and at home. While doing a load of laundry between hospital visits, I actually caught myself smiling for no good reason. I had to stop folding for a moment to actually put my finger on why my mood was so good. I finally decided that I was having a moment of "contentment." I can imagine that depression is a pretty common companion in these types of situations, but I can't say that I've felt really depressed so far. But, what has been constant is a feeling of discontentment. I never feel really settled and I constantly feel as if I am missing a part of myself. I wonder if this is what it will feel like when Riley and Brynn grow up and leave our house...but I am guessing that will seem "right" whereas there is nothing "right" about this separation. It was just a temporary contentment today, but it definitely felt like I could see a light at the end of the tunnel.
Saturday, October 18, 2008
Day 35
Things are moving so fast in the right direction these days that we can barely keep up! Today Brynn's doctors agreed to let her have a bottle anytime she seems "ready." They also changed her isolette's temperature control from being based on her skin temperature to being based on air temperature. I'm still not sure what that means exactly, but from what I understand, this is the next step before she'll be out in an open bed like a normal newborn nursery bed. She is now going to be swaddled in a blanket and (hold your breath) wearing clothes!! I nearly cried today when they went and found a premie onesie to put on her for the first time. It swallowed her whole but it was still the cutest thing ever! Thanks to both grandmas, Brynn already has 3-4 premie gowns and outfits, and I plan to get them washed tonight so we can take them to the hospital tomorrow. They also informed me that they are going to have me start trying to breastfeed tomorrow. They don't expect Brynn to have any great "skills" but we are now at the point that she can start learning. Anything that frees me from the pump every once in a while sounds great to me!
Blaine's sister Holly, her husband Lyle, and their 2 year old son Jack came up for a visit this weekend. Holly hasn't seen Brynn since she was 4 days old and was in shock at how much she has grown and changed. All of the sudden the past 5 weeks seem to have gone really quickly.
Blaine's sister Holly, her husband Lyle, and their 2 year old son Jack came up for a visit this weekend. Holly hasn't seen Brynn since she was 4 days old and was in shock at how much she has grown and changed. All of the sudden the past 5 weeks seem to have gone really quickly.
Friday, October 17, 2008
Day 34
Well, strap on your party hats because we have officially reached the 3 lb mark!! Actually, she weighed in tonight at 3 lb 1 oz. She has been a champ with her bottle feedings over the past day, sucking down a whole bottle 2 of the last 3 times. I have been saying all along that I'll be relieved when she makes it to 3 lbs, so I guess I need to officially breathe a sigh of relief.
Today was a day of firsts for other family members as well. Riley got to see Brynn for the first time. Brynn's isolette was moved for a second time today into the back row of babies near the back door. I asked the nurse if we could unhook her from her monitors for a short time to be able to take her to the back door and let Riley see her through the window. Unfortunately, Riley was just waking up from a nap when she arrived at the hospital and didn't get too excited about the whole thing. Of course, for those of you who know Riley, it's not too unusual for her not to get too excited about things. She did talk about Brynn a bit when we were leaving the hospital...mainly stating that she can hold "her" baby while her cousins Brett and Rory could only hold "their" baby.
Today was also the first time my mom ("Gram") got to hold Brynn. She even got to try a bottle feed with Brynn tonight. It was so nice to finally get to have some of those "Kodak" moments that always come with babies, and we appropriately documented the occasion with lots of photos.
Today was a day of firsts for other family members as well. Riley got to see Brynn for the first time. Brynn's isolette was moved for a second time today into the back row of babies near the back door. I asked the nurse if we could unhook her from her monitors for a short time to be able to take her to the back door and let Riley see her through the window. Unfortunately, Riley was just waking up from a nap when she arrived at the hospital and didn't get too excited about the whole thing. Of course, for those of you who know Riley, it's not too unusual for her not to get too excited about things. She did talk about Brynn a bit when we were leaving the hospital...mainly stating that she can hold "her" baby while her cousins Brett and Rory could only hold "their" baby.
Today was also the first time my mom ("Gram") got to hold Brynn. She even got to try a bottle feed with Brynn tonight. It was so nice to finally get to have some of those "Kodak" moments that always come with babies, and we appropriately documented the occasion with lots of photos.
Thursday, October 16, 2008
Day 33
Brynn weighed in tonight at 2 lbs 15 oz...we're already getting our 3 lb party hats out and ready. The most difficult part of today was discovering that Brynn had been moved out of our cozy little corner of the NICU onto a row of lots of other babies. Evidently, there was some emergency situation with another baby this morning that necessitated Brynn being moved. It was surprising to me how much it bothered me to be out of our new-found comfort zone. But, if the only bad news we have in a day is that her isolette was moved, then I say it's still a pretty good day! The one good thing about the move is that she is now close to the NICU windows that look out into the hall and we are going to be able to let Riley finally see Brynn through the window. Riley is coming home tomorrow after a fun week with Gram and Pop, so it will be a nice surprise for her to get to finally see this baby we've all been talking about so much.
The new pictures were taken this afternoon while I was holding her. We didn't get to give her any bottles today because she was either too sleepy at feeding time or her respiratory rate was slightly too high. So, we just held her this afternoon and Blaine snapped a few shots. When I arrived for her 9:00 PM feeding tonight, I was greeted with the offer of giving Brynn a bath. I obviously jumped right on that one! The amazing thing to me was that the absolute best part of the entire bath was getting to carry her 20 feet away from her isolette to the sink. Up until tonight, a nurse has always had to get her out of her isolette and lay her in my arms while she remains attached to the isolette with various cords. Tonight, the nurse simply disconnected all the cords and asked if I would like to carry her over to the sink. The simple act of picking her up and carrying her to the sink made it really feel like she was my baby for one of the first times. The bath was icing on the cake at that point.
The new pictures were taken this afternoon while I was holding her. We didn't get to give her any bottles today because she was either too sleepy at feeding time or her respiratory rate was slightly too high. So, we just held her this afternoon and Blaine snapped a few shots. When I arrived for her 9:00 PM feeding tonight, I was greeted with the offer of giving Brynn a bath. I obviously jumped right on that one! The amazing thing to me was that the absolute best part of the entire bath was getting to carry her 20 feet away from her isolette to the sink. Up until tonight, a nurse has always had to get her out of her isolette and lay her in my arms while she remains attached to the isolette with various cords. Tonight, the nurse simply disconnected all the cords and asked if I would like to carry her over to the sink. The simple act of picking her up and carrying her to the sink made it really feel like she was my baby for one of the first times. The bath was icing on the cake at that point.
Wednesday, October 15, 2008
Day 32
After yesterday's multiple procedures, today was a much-needed day of calm. She had a great day overall. She's now up to 2 lbs 13 oz. The occupational therapist, Ashley, did a feeding assessment of Brynn today. Of course, Ashley came when I wasn't there...but the second-hand news I got was that Brynn took the entire bottle for Ashley and the doctor ended up writing orders for an increase to 2 bottle feeds each day. She is also now up to 27 ml per feeding.
In other big news, Brynn actually had on a real Pampers premie diaper for the first time today. When she was born, she wore the tiniest diapers I have ever seen that were individually wrapped in packages the size of a deck of cards. In the past 1-2 weeks, she moved up into the next size of diapers but they were still special-order premie diapers. The Pampers diapers swallow her whole, but it was still great to see a "real" diaper on her tiny body.
The best news was that her nurse today actually predicted that Brynn might get to come home before her due date. Her due date was 11/21, and to keep my expectations low I've been trying to tell myself that we'll have her home by Christmas. So I'm trying not to actually think about this possibility too much...OK, I'm thinking about it plenty.
In other big news, Brynn actually had on a real Pampers premie diaper for the first time today. When she was born, she wore the tiniest diapers I have ever seen that were individually wrapped in packages the size of a deck of cards. In the past 1-2 weeks, she moved up into the next size of diapers but they were still special-order premie diapers. The Pampers diapers swallow her whole, but it was still great to see a "real" diaper on her tiny body.
The best news was that her nurse today actually predicted that Brynn might get to come home before her due date. Her due date was 11/21, and to keep my expectations low I've been trying to tell myself that we'll have her home by Christmas. So I'm trying not to actually think about this possibility too much...OK, I'm thinking about it plenty.
Tuesday, October 14, 2008
Day 31
Today marks Brynn's 1 month birthday. She weighed in last night at 2 lbs 12 oz. which is exactly one pound above her lowest weight. We are so amazed by how "big" she is now that it's hard to realize that babies who are born at this weight are still considered "micro premies!" I think we need to plan for a big 3-lb party when she makes it to that marker.
In honor of her 1 month birthday, Brynn had to endure 4-5 nasal tube insertion efforts (with one final success), an invasive eye exam consisting of clipping her eyes open, removal of a picc line, insertion of a new IV, a blood transfusion, and a partridge in a pear tree. I may not be great at throwing birthday parties, but I'm pretty sure I'll be able to out-do this for her first birthday party when she turns 1! I was unfortunately there for several of the nasal tube insertion attempts and it was so hard for me to stand in the room while she cried out in pain and anger. I vividly remember when Riley had to have an IV placed for fluids when she was about 9 months old. It was so traumatic but at least I could hold her and comfort her. With Brynn, I don't feel like I can even be a source of comfort...all the research says that she recognizes my voice, but the more time I spend away from her and the more that nurses provide her day-to-day care, I feel like she must recognize me less and less.
On a positive note, her first eye exam showed that her retina is "immature." That might not sound like good news, but it means that there is no evidence that her retina is developing with problems. She'll continue to have eye exams on a weekly basis until discharged (and perhaps after that as well) until her retina is fully formed. Although we are not out of the woods entirely regarding retinopathy of prematurity, the news today couldn't have been better.
She got to try a bottle again tonight. Although she only took 5 ml of a 25 ml bottle, it seemed like a better experience overall because she didn't spit up any of it. She even burped audibly, making Blaine and I feel very proud! Trying to burp such a tiny baby is no easy task. Basically, I try to sit her up and hold my hand under her chin while patting her back and Blaine sits glued to her monitors to make sure she continues to breathe. Not stressful at all really.
I feel the need to once again say thank you to all of you who have helped us survive the last month. It certainly has not been easy, but it would have been unbearable without our family and friends.
In honor of her 1 month birthday, Brynn had to endure 4-5 nasal tube insertion efforts (with one final success), an invasive eye exam consisting of clipping her eyes open, removal of a picc line, insertion of a new IV, a blood transfusion, and a partridge in a pear tree. I may not be great at throwing birthday parties, but I'm pretty sure I'll be able to out-do this for her first birthday party when she turns 1! I was unfortunately there for several of the nasal tube insertion attempts and it was so hard for me to stand in the room while she cried out in pain and anger. I vividly remember when Riley had to have an IV placed for fluids when she was about 9 months old. It was so traumatic but at least I could hold her and comfort her. With Brynn, I don't feel like I can even be a source of comfort...all the research says that she recognizes my voice, but the more time I spend away from her and the more that nurses provide her day-to-day care, I feel like she must recognize me less and less.
On a positive note, her first eye exam showed that her retina is "immature." That might not sound like good news, but it means that there is no evidence that her retina is developing with problems. She'll continue to have eye exams on a weekly basis until discharged (and perhaps after that as well) until her retina is fully formed. Although we are not out of the woods entirely regarding retinopathy of prematurity, the news today couldn't have been better.
She got to try a bottle again tonight. Although she only took 5 ml of a 25 ml bottle, it seemed like a better experience overall because she didn't spit up any of it. She even burped audibly, making Blaine and I feel very proud! Trying to burp such a tiny baby is no easy task. Basically, I try to sit her up and hold my hand under her chin while patting her back and Blaine sits glued to her monitors to make sure she continues to breathe. Not stressful at all really.
I feel the need to once again say thank you to all of you who have helped us survive the last month. It certainly has not been easy, but it would have been unbearable without our family and friends.
Monday, October 13, 2008
Day 30
Today's big news: I just got home from getting to give Brynn her first bottle!!! The nurses have gone back and forth in the past several weeks about when we might begin bottle feeding and I left my morning with Brynn a little disappointed that today's nurse didn't believe we were close to starting bottle feeds. I drove to meet my parents this afternoon to drop Riley off so I missed an afternoon feeding and Blaine called me after the 6:00 PM feeding with the news that the doctor put in an order for one bottle-feeding attempt per day. In order for her to get a bottle, she has to show certain "readiness" signs such as being awake and alert prior to feeding time and engaging in some rooting behavior. I drove straight to the hospital this evening and saw a bottle warming in a cup of water right when I got to Brynn's isolette. Meredith, the nurse tonight, informed me that I would get to give Brynn her first bottle tonight. I was pretty nervous at first but Meredith was great about giving me good advice without acting as if the world depending on my 2-lb-baby-bottle-feeding-skills.
Brynn was actually able to get a nipple the size of her arm into her mouth and she promptly began sucking. She was a champ at the whole "suck, swallow, and breathe" combination, but we did have some trouble with keeping the food down. Of course, after 5 minutes of Brynn looking like a pro, Meredith got called away for a delivery and left me in the care of another nurse who then had 6 babies to watch. Brynn then had her first massive spit-up while I frantically called for help. The second nurse didn't seem too worried so I kept giving Brynn the bottle. She ended up taking 20 ml out of the 25 ml in the bottle and then they put the rest down her feeding tube. At that point, she appeared to get choked or had an air bubble she couldn't get up. She turned bright red, started arching her back, and didn't make a noise. I got a little panicky at that point and the nurse grabbed her up and started to suction out her mouth and nose. Finally, she started crying which seemed like a good sign since that had to mean she was breathing! The nurse laid her on my chest and she promptly fell fast asleep. In the end, the nurses felt that she had done extremely well with the first bottle, but I was left feeling a little uneasy about the whole incident because of the drama at the end. But it wasn't so anxiety-provoking that it took all the joy out of getting to feed her an honest-to-goodness baby bottle rather than holding a syringe while milk runs down the tube to her stomach!
She gained only a few grams yesterday so we're holding our own at 2 lbs 11 oz. Our close friends, Danae and Geoff Hudson got to see her for the first time in a few weeks and they reported that she looks so much better. After seeing her every day, it's hard to get any perspective on her growth, and although I thought she looked a bit bigger, it was great to hear someone else say how much she has grown.
Brynn was actually able to get a nipple the size of her arm into her mouth and she promptly began sucking. She was a champ at the whole "suck, swallow, and breathe" combination, but we did have some trouble with keeping the food down. Of course, after 5 minutes of Brynn looking like a pro, Meredith got called away for a delivery and left me in the care of another nurse who then had 6 babies to watch. Brynn then had her first massive spit-up while I frantically called for help. The second nurse didn't seem too worried so I kept giving Brynn the bottle. She ended up taking 20 ml out of the 25 ml in the bottle and then they put the rest down her feeding tube. At that point, she appeared to get choked or had an air bubble she couldn't get up. She turned bright red, started arching her back, and didn't make a noise. I got a little panicky at that point and the nurse grabbed her up and started to suction out her mouth and nose. Finally, she started crying which seemed like a good sign since that had to mean she was breathing! The nurse laid her on my chest and she promptly fell fast asleep. In the end, the nurses felt that she had done extremely well with the first bottle, but I was left feeling a little uneasy about the whole incident because of the drama at the end. But it wasn't so anxiety-provoking that it took all the joy out of getting to feed her an honest-to-goodness baby bottle rather than holding a syringe while milk runs down the tube to her stomach!
She gained only a few grams yesterday so we're holding our own at 2 lbs 11 oz. Our close friends, Danae and Geoff Hudson got to see her for the first time in a few weeks and they reported that she looks so much better. After seeing her every day, it's hard to get any perspective on her growth, and although I thought she looked a bit bigger, it was great to hear someone else say how much she has grown.
Sunday, October 12, 2008
Day 29
Today marks "4 weeks of life" for Brynn using NICU terminology. I'm a little shocked that it's been that long already. When you think about a "normal" birth, we would be getting past the most difficult sleeplessness already. I even asked the nurse once if we'd be taking home a baby that is like a newborn in terms of sleeping or if she'd be more like a 1-2 month old. She said to expect the newborn sleeper. Ahhh...so there really are no advantages to a 2-3 month stay in the NICU!
Brynn had a relatively good day today. While being held by Blaine this afternoon, she spit-up pretty big which is one of the signs they look at to determine if she's tolerating food well. She also had difficulty with drops in her oxygen saturation while I was holding her. I ended up having to put her back in her isolette fairly early, and the nurse recommended that we forgo holding her anymore for the evening so that she could rest. I called her night shift nurse just minutes ago and she reported that her oxygen saturation has been good since around 5:00 PM. We'll just hope that it was a meaningless blip for her rather than a precursor to some problem. The best news is that she weighed in last night at 2 lbs 11 oz!
Riley is heading off tomorrow for a 5 day visit at Gram and Pop's house (my parents for those of you who don't know). I'm sure I'll end up missing her, but it will be great to be able to spend some more evening time at the hospital. Blaine and I will also be able to go visit together which is something we haven't managed since he started back at work last Wednesday.
Well, I'm off to pump. I have developed a love/hate relationship with the breastpump I am literally tied to every 2-3 hours. On the love side, it is the one thing I feel like I can do as a mother right now to help Brynn. On the hate side....well, it does make me feel a bit like a dairy cow. To make matters worse, I've always had problems with low milk supply so I've been having to take medication to try to improve my "milk production" (again, the dairy cow reference comes to mind). So the good news during the 5 days she was not eating was that I was able to actually get ahead in freezing milk for the first time ever. They even have a breastfeeding room with 5 or 6 pumps and privacy curtains in the NICU that is starting to feel like my second home. I've had several strange conversations with other women while we're both sequestered behind a curtain with our pumps whirring away. The conversations usually feel a little uncomfortable...kind of like talking to another person while you're both using the restroom.
We are crossing our fingers that we'll get Sandi, one of our favorite nurses, back from the weekend tomorrow. Hope you all had a restful weekend!
Brynn had a relatively good day today. While being held by Blaine this afternoon, she spit-up pretty big which is one of the signs they look at to determine if she's tolerating food well. She also had difficulty with drops in her oxygen saturation while I was holding her. I ended up having to put her back in her isolette fairly early, and the nurse recommended that we forgo holding her anymore for the evening so that she could rest. I called her night shift nurse just minutes ago and she reported that her oxygen saturation has been good since around 5:00 PM. We'll just hope that it was a meaningless blip for her rather than a precursor to some problem. The best news is that she weighed in last night at 2 lbs 11 oz!
Riley is heading off tomorrow for a 5 day visit at Gram and Pop's house (my parents for those of you who don't know). I'm sure I'll end up missing her, but it will be great to be able to spend some more evening time at the hospital. Blaine and I will also be able to go visit together which is something we haven't managed since he started back at work last Wednesday.
Well, I'm off to pump. I have developed a love/hate relationship with the breastpump I am literally tied to every 2-3 hours. On the love side, it is the one thing I feel like I can do as a mother right now to help Brynn. On the hate side....well, it does make me feel a bit like a dairy cow. To make matters worse, I've always had problems with low milk supply so I've been having to take medication to try to improve my "milk production" (again, the dairy cow reference comes to mind). So the good news during the 5 days she was not eating was that I was able to actually get ahead in freezing milk for the first time ever. They even have a breastfeeding room with 5 or 6 pumps and privacy curtains in the NICU that is starting to feel like my second home. I've had several strange conversations with other women while we're both sequestered behind a curtain with our pumps whirring away. The conversations usually feel a little uncomfortable...kind of like talking to another person while you're both using the restroom.
We are crossing our fingers that we'll get Sandi, one of our favorite nurses, back from the weekend tomorrow. Hope you all had a restful weekend!
Saturday, October 11, 2008
Day 28
I used to look forward to weekends for the same reasons everyone else does. Now, I've found that I actually dread the weekends a bit because it means trying to juggle taking care of Riley all day with hospital visits. Blaine and I traded off visiting Brynn every 3 hours today while the other one stayed at home with Riley. By the time we leave our house to get to the hospital, hold her for an hour during a feeding, and drive back home, there's really only 45 minutes or so before the next person needs to leave. But, I'll take this schedule any day if it means that Brynn continues to be stable.
Brynn was getting fed 15 ml today and will probably reach her maximum feeds in another day or so. Her belly continues to look good and she has been pooping regularly with the help of a glycerin suppository. It would be better if she didn't need the suppository, but after last week's scares, we'd rather avoid any amount of "backup." She was wide awake for the entire time I was holding her at noon today. She just looked around wide-eyed for over an hour.
I found out that Brynn has her first eye exam on Tuesday. One of the common and serious problems with early babies is called retinopathy of prematurity (ROP). Basically, it's a problem in the development of the retina which can lead to vision loss or blindness. Evidently,
ROP is much more common in babies that have needed oxygen for prolonged periods of time. Since Brynn hasn't ever required oxygen, her doctors have said that they would be very surprised if she has any problems with ROP. It will be great when/if we can cross that off our list of things to worry about. We're slowly making our way down the list of hurdles that the doctors all warned us about in the beginning including bleeding in the brain (she's had 2 clear head ultrasounds), NEC, and ROP (hopefully!).
I haven't found out her weight for tonight. We're crossing our fingers for at least a slight gain, but I'll have to update everyone tomorrow.
Brynn was getting fed 15 ml today and will probably reach her maximum feeds in another day or so. Her belly continues to look good and she has been pooping regularly with the help of a glycerin suppository. It would be better if she didn't need the suppository, but after last week's scares, we'd rather avoid any amount of "backup." She was wide awake for the entire time I was holding her at noon today. She just looked around wide-eyed for over an hour.
I found out that Brynn has her first eye exam on Tuesday. One of the common and serious problems with early babies is called retinopathy of prematurity (ROP). Basically, it's a problem in the development of the retina which can lead to vision loss or blindness. Evidently,
ROP is much more common in babies that have needed oxygen for prolonged periods of time. Since Brynn hasn't ever required oxygen, her doctors have said that they would be very surprised if she has any problems with ROP. It will be great when/if we can cross that off our list of things to worry about. We're slowly making our way down the list of hurdles that the doctors all warned us about in the beginning including bleeding in the brain (she's had 2 clear head ultrasounds), NEC, and ROP (hopefully!).
I haven't found out her weight for tonight. We're crossing our fingers for at least a slight gain, but I'll have to update everyone tomorrow.
Friday, October 10, 2008
Day 27
What a difference a week can make. Last week at this time, I could barely see out of my swollen eyes because I'd been crying so much following the NEC scare. And today, I feel better about Brynn than ever! It really is the most extreme roller coaster ride ever. Last night she weighed in at an amazing 2 lbs 9 oz which was up 2 ounces from her previous weight. I just returned from the hospital for her 9:00 PM feed and she was weighed while I was there at 2 lb 8 oz, down about 20 grams. We're really happy with the amount of weight she's gained this week and she looks so much bigger to me already. I know if you were seeing her for the first time, "big" would not be the word that comes to mind. But, given how far she's come already, she looks so much better to me.
I went in this morning for her 9:00 AM and 12:00 PM feedings while Blaine went in for the 3:00 PM feeding. While I was there, the chaplain of the unit came by for a quick chat. I was able to share with her and Sandi (the nurse) all the emotions that I had experienced during Brynn's first few days in the NICU. During the C-Section, as soon as my doctor announced that the baby was a girl, I began asking over and over "how much does she weigh?" In the 2 weeks leading up to delivery, when I knew things weren't going well, I read lots of information about birth weight and gestational age. My primary goal was for the baby to reach 3 lbs 5 oz because the research suggested that this weight was associated with few long-term complications. Based on the ultrasound that morning estimating 2 lbs 5 oz, I knew my goal was impossible. But, the ultrasound had a +/-5 oz error margin and I was really hoping for 2 lbs 10 oz. They didn't end up weighing Brynn until she arrived in the NICU that night. Blaine brought me the news that she weighed only 1 lb 15 oz. I was absolutely devastated at that news. I remember immediately thinking that it was impossible that she would survive. Now, I was heavily drugged at that point, so I can excuse myself a bit, but the feeling persisted for several days. It was so bizarre to me that the nurses and all my family and friends kept congratulating us. Family members were asking what they could do to help get Brynn's nursery in order (since we hadn't done much of anything, thinking we had another 10 weeks to prepare), and although I reacted with appropriate gratitude, I remember thinking "won't that be excruciating torture to have to go home to a nursery." On the third day of feeling really disconnected and somewhat avoidant of the NICU, I worked up the courage to ask the vital question to her nurse about her chances of survival. I was floored when she told us that Brynn had a 90% chance of doing very well. Of all the game-changing moments we've had during this experience, I feel like that moment changed everything for me. Suddenly, I was so ashamed of how little faith I'd had in Brynn. She had been fighting with everything she had and I had thrown in the towel without ever trying. The best thing about tonight was being able to look into her precious eyes and tell her that I now know that I'll have a lifetime to make it up to her.
I went in this morning for her 9:00 AM and 12:00 PM feedings while Blaine went in for the 3:00 PM feeding. While I was there, the chaplain of the unit came by for a quick chat. I was able to share with her and Sandi (the nurse) all the emotions that I had experienced during Brynn's first few days in the NICU. During the C-Section, as soon as my doctor announced that the baby was a girl, I began asking over and over "how much does she weigh?" In the 2 weeks leading up to delivery, when I knew things weren't going well, I read lots of information about birth weight and gestational age. My primary goal was for the baby to reach 3 lbs 5 oz because the research suggested that this weight was associated with few long-term complications. Based on the ultrasound that morning estimating 2 lbs 5 oz, I knew my goal was impossible. But, the ultrasound had a +/-5 oz error margin and I was really hoping for 2 lbs 10 oz. They didn't end up weighing Brynn until she arrived in the NICU that night. Blaine brought me the news that she weighed only 1 lb 15 oz. I was absolutely devastated at that news. I remember immediately thinking that it was impossible that she would survive. Now, I was heavily drugged at that point, so I can excuse myself a bit, but the feeling persisted for several days. It was so bizarre to me that the nurses and all my family and friends kept congratulating us. Family members were asking what they could do to help get Brynn's nursery in order (since we hadn't done much of anything, thinking we had another 10 weeks to prepare), and although I reacted with appropriate gratitude, I remember thinking "won't that be excruciating torture to have to go home to a nursery." On the third day of feeling really disconnected and somewhat avoidant of the NICU, I worked up the courage to ask the vital question to her nurse about her chances of survival. I was floored when she told us that Brynn had a 90% chance of doing very well. Of all the game-changing moments we've had during this experience, I feel like that moment changed everything for me. Suddenly, I was so ashamed of how little faith I'd had in Brynn. She had been fighting with everything she had and I had thrown in the towel without ever trying. The best thing about tonight was being able to look into her precious eyes and tell her that I now know that I'll have a lifetime to make it up to her.
Thursday, October 9, 2008
Day 26
Another good day! No news was evidently good news on her latest blood culture, so as of today we are declaring her infection-free! Her weight was up again to 2 lbs 7 oz but the nurse warned us that she was weighed while receiving her blood transfusion last night which means there was an extra IV line and a cord being weighed with her. So, we might not stay at the same weight tonight but she's probably going to stay at the 2 lb 6 oz mark at least. Who knew I could become emotionally attached to an ounce! She had to receive her second blood transfusion last night because premies aren't capable of replacing blood very quickly or easily and they've had to draw so much blood for various tests that she was getting low. The low blood count also contributes to "events" when she stops breathing and her heart rate drops momentarily. We've been present for several "events" and it's always a trigger for our hearts to stop beating as well.
I got to hold her for her 9:00 AM feeding and her 3:00 PM feeding while Blaine went in on his lunch for the 12:00 PM feeding. Blaine teaches a late night class on Thursdays so I'll have to stay at home with Riley and miss the 9:00 PM feeding. People have been asking me if I'm exhausted over the past few weeks. Actually, after getting over some initial insomnia, I've been getting plenty of sleep and it was difficult to spend hours at a time at the hospital peering in at her darkened isolette. I think the exhausting part is probably beginning now since I feel like I really want to be there for as many feedings as possible. That urge will get even stronger once they start bottle feeds. The NICU allows us to list 4 additional people besides Blaine and me who can participate in holding and feeding which is going to be great.
The other good news is that I finally resolved some insurance issues. I read online that really premature babies are sometimes referred to as "million dollar babies" because their NICU care can be so expensive and go on so long. This caught my attention particularly because I was just informed that my insurance policy has a million dollar lifetime limit. We started scrambling to look into alternative coverage options until I found out that if she maxes out her policy she can automatically be covered under Blaine's policy. Wheww. We also found out that she is covered under Medicaid and will receive disability benefits while in the hospital because of her "very low birth weight." Social Security states that she is "presumed disabled" on the basis of her weight--not exactly something that was easy to hear, but we certainly won't turn down the extra coverage. I'm just glad to stop thinking about the insurance stuff for a while and focus all my stress on other things!
As of today, Brynn is 34 weeks gestational age. When we first landed in the NICU, I found it funny that they continue to count weeks as if I were still pregnant. There are lots of markers based on gestational age and 34 weeks is a great place to reach. When I first discovered that there were some problems with the pregnancy, my primary goal was to get to 34 weeks....well, we're there now but it wasn't quite the way I had hoped. Regardless, I still feel like we've made it to an important marker.
I got to hold her for her 9:00 AM feeding and her 3:00 PM feeding while Blaine went in on his lunch for the 12:00 PM feeding. Blaine teaches a late night class on Thursdays so I'll have to stay at home with Riley and miss the 9:00 PM feeding. People have been asking me if I'm exhausted over the past few weeks. Actually, after getting over some initial insomnia, I've been getting plenty of sleep and it was difficult to spend hours at a time at the hospital peering in at her darkened isolette. I think the exhausting part is probably beginning now since I feel like I really want to be there for as many feedings as possible. That urge will get even stronger once they start bottle feeds. The NICU allows us to list 4 additional people besides Blaine and me who can participate in holding and feeding which is going to be great.
The other good news is that I finally resolved some insurance issues. I read online that really premature babies are sometimes referred to as "million dollar babies" because their NICU care can be so expensive and go on so long. This caught my attention particularly because I was just informed that my insurance policy has a million dollar lifetime limit. We started scrambling to look into alternative coverage options until I found out that if she maxes out her policy she can automatically be covered under Blaine's policy. Wheww. We also found out that she is covered under Medicaid and will receive disability benefits while in the hospital because of her "very low birth weight." Social Security states that she is "presumed disabled" on the basis of her weight--not exactly something that was easy to hear, but we certainly won't turn down the extra coverage. I'm just glad to stop thinking about the insurance stuff for a while and focus all my stress on other things!
As of today, Brynn is 34 weeks gestational age. When we first landed in the NICU, I found it funny that they continue to count weeks as if I were still pregnant. There are lots of markers based on gestational age and 34 weeks is a great place to reach. When I first discovered that there were some problems with the pregnancy, my primary goal was to get to 34 weeks....well, we're there now but it wasn't quite the way I had hoped. Regardless, I still feel like we've made it to an important marker.
Wednesday, October 8, 2008
Day 25
After several days of turmoil, I am happy to report that we had a good day today! Today was Blaine's first day back to work since Brynn's birth. Drury's art department has been so amazing and called Blaine a few days after Brynn was born to tell him that they were covering all of his courses for him for 3 weeks. I don't really know how I could have managed the last 3 weeks on my own without that valuable time off. While he went to work, I went in for my first NICU visit of the day around 11:00 AM. When I got there, one of our favorite nurses, Sandi, was on duty. She reported that Brynn gained a whopping ounce in the last day and she is now up to 2 lbs 6 oz. It's pretty common for her to gain a lot and then lose a little the next day, so we're prepared to hold pretty steady for the next day or two. The other big news was that they started feeding her again today! She started today with 3 ml of breastmilk which is less than 1 tsp. If things go well and her tummy tolerates the food, they will increase her intake by 1 ml every 6 hours until she reaches her maximum amount (around 20 ml). Sandi told me that Brynn had her first bath the night before. She even showed me the little bathtub they used to bathe her. For me, the news was bittersweet. I was excited that she'd had her first bath, but it was once again difficult to know that not only had I missed another "first," but I hadn't even known it was going on. The nurses were nice enough to take some pictures for us and I'll try to get them posted here in the next day or so.
I also discussed the occupational therapist's suggestion that before we begin trying to bottle feed, Brynn will need to learn to tolerate being out of her isolette more frequently. Sandi agreed and changed our orders to read "holding or skin-to-skin contact prn." For those of you less familiar with all this medical lingo, this translates to "we get to hold her anytime we want!!" So, for her first feeding at noon, I got to actually hold her in my lap cuddled up in a new blanket from her Nana. While she got her food, I held her pacifier in her mouth to get her used to sucking while her tummy gets full. Blaine arrived for a quick visit during his lunch break while I was holding her. For one of the first times, things felt semi-normal to me. I was getting to hold my baby while actually looking at her and letting her suck on a pacifier. It was a priceless moment that I'll probably never forget.
We went back for our second visit after Riley went to bed. An MSU student and family friend, Chelsea Foreman, is going to be coming to babysit from 8-10 on Monday and Wednesday nights so that Blaine and I can visit Brynn together now that he's back at work. When we got there, Brynn was receiving her second blood transfusion and for a second I was afraid that we would lose another chance to hold her. But, her nurse let us go ahead and hold her while the transfusion was being processed. She laid on my chest and promptly fell asleep for the entire hour I held her. We left for home feeling really good after several days of anxiety and heartache.
I also discussed the occupational therapist's suggestion that before we begin trying to bottle feed, Brynn will need to learn to tolerate being out of her isolette more frequently. Sandi agreed and changed our orders to read "holding or skin-to-skin contact prn." For those of you less familiar with all this medical lingo, this translates to "we get to hold her anytime we want!!" So, for her first feeding at noon, I got to actually hold her in my lap cuddled up in a new blanket from her Nana. While she got her food, I held her pacifier in her mouth to get her used to sucking while her tummy gets full. Blaine arrived for a quick visit during his lunch break while I was holding her. For one of the first times, things felt semi-normal to me. I was getting to hold my baby while actually looking at her and letting her suck on a pacifier. It was a priceless moment that I'll probably never forget.
We went back for our second visit after Riley went to bed. An MSU student and family friend, Chelsea Foreman, is going to be coming to babysit from 8-10 on Monday and Wednesday nights so that Blaine and I can visit Brynn together now that he's back at work. When we got there, Brynn was receiving her second blood transfusion and for a second I was afraid that we would lose another chance to hold her. But, her nurse let us go ahead and hold her while the transfusion was being processed. She laid on my chest and promptly fell asleep for the entire hour I held her. We left for home feeling really good after several days of anxiety and heartache.
Tuesday, October 7, 2008
Day 24
Today was at least slightly less eventful than the past several days. I went to visit this morning and spent some time just sitting by her isolette talking to her and touching her head. The nurses told us early on that premies can't tolerate soft stroking or rubbing because it overstimulates them. Instead, they prefer firm pressure. Of course, all I really want to do is softly rub her head or stroke her face, but I refrain and instead lay my hand firmly on the top of her head on on the bottom of her feet. She was very calm and peaceful this morning and I got the good news that she gained 14 grams since yesterday and is now up to 2 lbs 5 oz. This is an ironic weight to reach because on the last ultrasound the day of her delivery, the size estimate was 2 lbs 5 oz. So, it only took 24 days to actually get there!!
After lunch, Blaine and I went back to the NICU so that I could hold Brynn. When we got there, I immediately noticed that there was a new open baby bed pulled back into Brynn's corner with a new baby that looked tiny like Brynn. It actually took me several seconds to realize that it was Brynn! She was laying in an open bed with a warming light above her. She was wide awake and flailing all around. There was another baby's family getting ready to take their baby home so the corner was a bit crowded and hectic. The nurse (one we had met just today) quickly told us that she had Brynn out of her isolette because Dr. Vish (one of the neonatologists) was planning on doing a lumbar puncture (spinal tap). We were immediately alarmed and began to question the nurse about why another spinal tap was necessary. She was clearly uncomfortable with our questions and was very busy helping the other family. She evidently went straight to Dr. Vish to get him to answer our questions. I am imagining their conversation going something like "please help me deal with this neurotic family so that I can get this other baby home." Dr. Vish came over and my first question was "why does Brynn need another spinal tap?" He hesitated for a long time and looked at me sort of strangely. He finally stated "did you say ANOTHER spinal tap?" It turns out that in rounds they discussed her positive blood culture and mentioned that she needed to have a lumbar puncture to rule out meningitis. They did not find the earlier results in the chart and I guess none of the doctors remembered that they had already done the test on Sunday. Dr. Vish quickly went to the chart, found the results, and relieved us by telling us that the test was definitely not necessary. Yikes!! So, Brynn barely escaped a 2nd spinal tap and we are really thankful that we arrived when we did. We know that these types of things happen in a NICU that is full of premature and sick babies, but it further enhanced our feelings of anxiety and the need to be there as much as possible to be proactive in Brynn's care. Brynn was immediately put back in her isolette but she was as agitated as I have seen her. While being in the open bed, she didn't have the "nest" of bedding around her that serves to give her boundaries similar to what she would be experiencing in the womb. Her heart rate jumped above 200 and she was crying a good deal. In the end, we weren't able to hold her because she was too overstimulated at that point.
We went home this evening and tried to focus on the good news--her most recent blood culture hasn't grown any bacteria yet (we'll know the final verdict tomorrow evening), her belly x-rays look good, and she is continuing to gain weight. Today is the 5th day without food, so we will hopefully start feeding again in the next several days. I spoke with the occupational therapist today who is the person responsible for helping when we start trying bottle feeds. She thinks we'll start trying her with a bottle sometime after she proves that her tummy can tolerate the feedings again. She continues to suck away at her pacifier so I'm hopeful that she'll be able to manage a bottle when the time comes.
After dinner at home tonight, we played a rowdy game of "monster" with Riley and all ended up laughing hysterically. It felt really good to laugh.
I just wanted to tell you all how much we appreciate the comments you've been leaving. Blaine's mom, Kathy, was the one to suggest a blog. I was really hesitant at first, not knowing how I'd feel about having other people read my personal thoughts. But, already I know that this is going to be one of the best things I could do for myself and several of you have told me that you appreciate being able to get the latest news whenever you want. This can be a lonely experience and now I realize just how large our support network really is. Thank you.
After lunch, Blaine and I went back to the NICU so that I could hold Brynn. When we got there, I immediately noticed that there was a new open baby bed pulled back into Brynn's corner with a new baby that looked tiny like Brynn. It actually took me several seconds to realize that it was Brynn! She was laying in an open bed with a warming light above her. She was wide awake and flailing all around. There was another baby's family getting ready to take their baby home so the corner was a bit crowded and hectic. The nurse (one we had met just today) quickly told us that she had Brynn out of her isolette because Dr. Vish (one of the neonatologists) was planning on doing a lumbar puncture (spinal tap). We were immediately alarmed and began to question the nurse about why another spinal tap was necessary. She was clearly uncomfortable with our questions and was very busy helping the other family. She evidently went straight to Dr. Vish to get him to answer our questions. I am imagining their conversation going something like "please help me deal with this neurotic family so that I can get this other baby home." Dr. Vish came over and my first question was "why does Brynn need another spinal tap?" He hesitated for a long time and looked at me sort of strangely. He finally stated "did you say ANOTHER spinal tap?" It turns out that in rounds they discussed her positive blood culture and mentioned that she needed to have a lumbar puncture to rule out meningitis. They did not find the earlier results in the chart and I guess none of the doctors remembered that they had already done the test on Sunday. Dr. Vish quickly went to the chart, found the results, and relieved us by telling us that the test was definitely not necessary. Yikes!! So, Brynn barely escaped a 2nd spinal tap and we are really thankful that we arrived when we did. We know that these types of things happen in a NICU that is full of premature and sick babies, but it further enhanced our feelings of anxiety and the need to be there as much as possible to be proactive in Brynn's care. Brynn was immediately put back in her isolette but she was as agitated as I have seen her. While being in the open bed, she didn't have the "nest" of bedding around her that serves to give her boundaries similar to what she would be experiencing in the womb. Her heart rate jumped above 200 and she was crying a good deal. In the end, we weren't able to hold her because she was too overstimulated at that point.
We went home this evening and tried to focus on the good news--her most recent blood culture hasn't grown any bacteria yet (we'll know the final verdict tomorrow evening), her belly x-rays look good, and she is continuing to gain weight. Today is the 5th day without food, so we will hopefully start feeding again in the next several days. I spoke with the occupational therapist today who is the person responsible for helping when we start trying bottle feeds. She thinks we'll start trying her with a bottle sometime after she proves that her tummy can tolerate the feedings again. She continues to suck away at her pacifier so I'm hopeful that she'll be able to manage a bottle when the time comes.
After dinner at home tonight, we played a rowdy game of "monster" with Riley and all ended up laughing hysterically. It felt really good to laugh.
I just wanted to tell you all how much we appreciate the comments you've been leaving. Blaine's mom, Kathy, was the one to suggest a blog. I was really hesitant at first, not knowing how I'd feel about having other people read my personal thoughts. But, already I know that this is going to be one of the best things I could do for myself and several of you have told me that you appreciate being able to get the latest news whenever you want. This can be a lonely experience and now I realize just how large our support network really is. Thank you.
Monday, October 6, 2008
Day 23
Given the events of last evening, I'm wondering if I shouldn't wait until 11:59 PM each night to post the day's news. After posting the good news yesterday, Blaine and I actually took a nap in the afternoon and went out to dinner with Riley last night. When we got seated at the restaurant, I took a look at my phone and saw a call back number with the dreaded 820 prefix of the hospital. So I left the table to go outside and return the call. Sure enough, it was the NICU calling to let us know that the blood culture they sent out as a preventative measure on Friday came back positive. This resulted in an automatic spinal tap. Of all the things that have happened so far, this one struck me as the most surreal. As a parent, to find out that my tiny baby had a spinal tap while I took a nap and had dinner at a restaurant was difficult to bear. The nurse said that the results of the tap and the second blood culture would not be back until this morning, but she was hopeful that the antiobiotics they started as a preventive measure on Friday would have done the trick to help get rid of the infection. Of course, the only thing I could hear in my head was Friday's nurse explaining that they had sent off a blood culture and didn't expect anything to grow, stating "it would be somewhat worse to find that she has an infection throughout her blood than to discover that she has an infection only in her tummy." So....I was hearing that now we had an infection throughout the blood....great. And the infection could possibly lead to spinal meningitis...even greater.
I felt an extreme need to be at the hospital, so after a tense and rather unenjoyable dinner, I dropped Blaine and Riley off at home and headed into the hospital. A different nurse was already on duty when I got there and within 5 minutes, my worst fears were relieved--the spinal tap results were already back and they were negative. Hallelujah! She also put a much more positive spin on the blood culture results, suggesting that the results provided an explanation for her intestinal swelling other than necrotizing entercolitis. Overall, she felt that the news was not too bad and I decided to go with it.
This morning we arrived only to be kicked out for the physician rounds within 5 minutes. She was very alert and was calmly looking around for the short time we were there. We went back after lunch determined to speak to a physician before leaving about the whole infection thing. Blaine got to hold Brynn today and after waking up momentarily upon being picked up, she fell asleep promptly on his chest and didn't move a muscle for the entire hour. We got to speak to Dr. Slack (a neonatologist who has been at St. John's NICU for the past 25 years and is the current head of the NICU) after holding Brynn. She was very reassuring, reporting that the infection was the likely cause of her bowel distension rather than NEC. Although the results are not certain yet, she believes that the infection is likely to be a staph infection. She reported that they plan to continue to avoid feeding her for a minimum of 5 days even though they don't think NEC was the culprit at this point. Clinically, she reported that Brynn looks great which reassures her that the antiobiotic is likely the correct one. We won't see the final results of the next blood culture for another 2 days so we're crossing our fingers that the antiobiotic has cleared things up.
In the weight department, she gained 17 grams today for a total of 1029 grams (still 2 lbs 4 oz). I am hoping that this is really all the news for today, and I hope I have very little to post tomorrow...we're hoping for a boring day with the only news being a nice, big weight gain....all fingers crossed please.
I felt an extreme need to be at the hospital, so after a tense and rather unenjoyable dinner, I dropped Blaine and Riley off at home and headed into the hospital. A different nurse was already on duty when I got there and within 5 minutes, my worst fears were relieved--the spinal tap results were already back and they were negative. Hallelujah! She also put a much more positive spin on the blood culture results, suggesting that the results provided an explanation for her intestinal swelling other than necrotizing entercolitis. Overall, she felt that the news was not too bad and I decided to go with it.
This morning we arrived only to be kicked out for the physician rounds within 5 minutes. She was very alert and was calmly looking around for the short time we were there. We went back after lunch determined to speak to a physician before leaving about the whole infection thing. Blaine got to hold Brynn today and after waking up momentarily upon being picked up, she fell asleep promptly on his chest and didn't move a muscle for the entire hour. We got to speak to Dr. Slack (a neonatologist who has been at St. John's NICU for the past 25 years and is the current head of the NICU) after holding Brynn. She was very reassuring, reporting that the infection was the likely cause of her bowel distension rather than NEC. Although the results are not certain yet, she believes that the infection is likely to be a staph infection. She reported that they plan to continue to avoid feeding her for a minimum of 5 days even though they don't think NEC was the culprit at this point. Clinically, she reported that Brynn looks great which reassures her that the antiobiotic is likely the correct one. We won't see the final results of the next blood culture for another 2 days so we're crossing our fingers that the antiobiotic has cleared things up.
In the weight department, she gained 17 grams today for a total of 1029 grams (still 2 lbs 4 oz). I am hoping that this is really all the news for today, and I hope I have very little to post tomorrow...we're hoping for a boring day with the only news being a nice, big weight gain....all fingers crossed please.
Sunday, October 5, 2008
Day 22
Brynn's nurse met us today with the news that "she's looking much better." Nothing like a little stress relief right off the bat to set the visit off right. She was cuddled into her isolette on her tummy so cutely that we even hated to disturb her. She is generally kept in the dark so that her immature eyes can be minimally exposed to light. So we usually take turns lifting up the cover on her isolette and taking peeks at her.
Over the past few weeks, we've settled into a routine of visiting Brynn after dropping Riley at preschool in the morning, eating lunch, and then going back to the hospital for a longer visit to hold her in the afternoons. Per her doctor's orders, we are prescribed "cuddle care" (which means holding her skin-to-skin) up to one hour per day. Blaine and I generally trade off days getting to hold her and today was my turn.
The nurse gets Brynn out of the isolette and tries to rearrange all of the many cords coming off of Brynn before placing her on my chest. They have reclining chairs for cuddle care so that you can lean back and let the baby sleep on your chest without killing your arms. Brynn was a bit fussy today, meaning that she whimpered a bit like a puppy and squirmed around. She has a premie pacifier that she likes to suck on if you can actually manage to get it into her tiny mouth. Everyday we get a bit more comfortable with handling her. The first time they asked us to hold her, we were both terrified...would we crush her with our gigantic paws? would she stop breathing? would we? But I have since had the courage to change a few diapers (which are the size of a deck of cards) and take her temperature for one nurse. Today was a bit crowded back in our little corner of the NICU with several sets of parents visiting at the same time. Brynn's current "roomie" is a full-term 8 lb baby that looks like a giant to us.
I posted a picture that my mom took this week of the scrapbooking pages the nurses have placed on Brynn's wall beside her isolette (and I plan to post more pictures when I can figure out my new camera). I'll gush more about how much we love the staff in the NICU later, but these scrapbook pages are just one of the millions of things they do that help us feel like we do actually have a baby rather than a mysterious medical anomaly.
I almost forgot to give the daily weight update. She was 1012 grams today which was down 9 grams from yesterday and converts to 2 lbs 4 oz. We feel like we've had to fight tooth and nails for every ounce she's gained after dropping to 1 lb 12 oz in the first week. Now that she's not going to be fed for another 6 days, we were concerned that we'd lose ground (and of course, we may) but her doctor told us that she can certainly continue to gain weight on her IV feeding solution. The difference is that she won't be getting food into her stomach.
Since it's the weekend and Blaine's mom had to head back home after noon, we didn't go back for an afternoon visit so that we could stay home with Riley. Siblings are only allowed one 30 minute visit per week, but Riley still hasn't even seen Brynn because she has had a cough or runny nose consistently and we are way too paranoid about infection to take her in the NICU.
So that's the news for today. We'll cross our fingers for more good news tomorrow.
Over the past few weeks, we've settled into a routine of visiting Brynn after dropping Riley at preschool in the morning, eating lunch, and then going back to the hospital for a longer visit to hold her in the afternoons. Per her doctor's orders, we are prescribed "cuddle care" (which means holding her skin-to-skin) up to one hour per day. Blaine and I generally trade off days getting to hold her and today was my turn.
The nurse gets Brynn out of the isolette and tries to rearrange all of the many cords coming off of Brynn before placing her on my chest. They have reclining chairs for cuddle care so that you can lean back and let the baby sleep on your chest without killing your arms. Brynn was a bit fussy today, meaning that she whimpered a bit like a puppy and squirmed around. She has a premie pacifier that she likes to suck on if you can actually manage to get it into her tiny mouth. Everyday we get a bit more comfortable with handling her. The first time they asked us to hold her, we were both terrified...would we crush her with our gigantic paws? would she stop breathing? would we? But I have since had the courage to change a few diapers (which are the size of a deck of cards) and take her temperature for one nurse. Today was a bit crowded back in our little corner of the NICU with several sets of parents visiting at the same time. Brynn's current "roomie" is a full-term 8 lb baby that looks like a giant to us.
I posted a picture that my mom took this week of the scrapbooking pages the nurses have placed on Brynn's wall beside her isolette (and I plan to post more pictures when I can figure out my new camera). I'll gush more about how much we love the staff in the NICU later, but these scrapbook pages are just one of the millions of things they do that help us feel like we do actually have a baby rather than a mysterious medical anomaly.
I almost forgot to give the daily weight update. She was 1012 grams today which was down 9 grams from yesterday and converts to 2 lbs 4 oz. We feel like we've had to fight tooth and nails for every ounce she's gained after dropping to 1 lb 12 oz in the first week. Now that she's not going to be fed for another 6 days, we were concerned that we'd lose ground (and of course, we may) but her doctor told us that she can certainly continue to gain weight on her IV feeding solution. The difference is that she won't be getting food into her stomach.
Since it's the weekend and Blaine's mom had to head back home after noon, we didn't go back for an afternoon visit so that we could stay home with Riley. Siblings are only allowed one 30 minute visit per week, but Riley still hasn't even seen Brynn because she has had a cough or runny nose consistently and we are way too paranoid about infection to take her in the NICU.
So that's the news for today. We'll cross our fingers for more good news tomorrow.
Saturday, October 4, 2008
Day 21
There have been so many people who are interested in hearing updates about Brynn's progress that I decided to start posting on a blog. If you choose to read my postings, please be forewarned that common NICU excitement includes in-depth discussions about baby poop, intestinal functioning, spit-up, and of course, breast milk issues. Hopefully, my in-depth discussion of an explosive pooping episode (such as yesterday) will fill you with the same joy that Blaine and I experience! If not, this might just be too much information for you, and you can feel free to email or call me for personal updates.
Just to get everyone up to speed, Brynn was born at 30 weeks gestation (40 weeks is full term) after concerns had already been raised about her being growth restricted in addition to the onset of preeclampsia for me. She was born on September 14th at 9:37 PM via emergency C-section and weighed in at a whopping 1 lb 15 oz.
Just to get everyone up to speed, Brynn was born at 30 weeks gestation (40 weeks is full term) after concerns had already been raised about her being growth restricted in addition to the onset of preeclampsia for me. She was born on September 14th at 9:37 PM via emergency C-section and weighed in at a whopping 1 lb 15 oz.
- Good news so far:
- She has never required a ventilator!
- She has never required a ventilator!
- After 21 days in the NICU, she is now up to 2 lbs 4 oz.
- She got her IV/pick line removed two days ago.
- Bad news so far:
- She weighed only 1 lb 15 oz at birth which gives her the double-whammy effect of being far too small for even her early gestational age
- She had to have her IV/pick line placed again yesterday during a scary episode of what her neonatologists thought might be the dreaded necrotizing entercolitis (NEC...please bear with my use of newer and scarier acronyms as the days progress) which is a severe infection of the intestines...this episode turned out to be a severe case of DSB (as Dr. Slack, one of her neonatologists defines as the "dreaded sewer backup," or severe constipation)
- Because of the scare yesterday, she will not be fed (via her NG tube) for at least 7 days to make sure her intestines are working well. After that, we'll start the slow process of building up her tolerance for food again.
I know that lots of people have been wondering when she's likely to get to come home. The NICU personnel told us that there is no specific minimum weight criteria, but she has to be able to do the following things: 1) breathe with minimal oxygen (check) 2) tolerate bottle feedings for all meals (negative) 3) maintain her temperature (negative) and 4) tolerate a car seat (unknown).
Just in case you haven't heard this from us personally--we can't even express how much we appreciate all of your support, kindness, and prayers. I know it's cliche, but these are the tough times when you truly realize how amazing your friends and family are, and we will always be grateful for every prayer, meal, word of kindness, and gift.
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