=Tom
I was thinking about just putting his name here to get the point across regarding how strong Tom has been. However, he deserves more credit for how amazing he has been...more then I could ever give him.
-While in the hospital, almost every night nurse commented on our team work with the three hour pumpings. How great it was that Tom was up with me, cleaning the bottles every time, and then walking them down to the NICU.
-I cannot imagine how scary the first few hours of Miss KelliAnne's life were and Tom handled it like a champ. He did not leave her side and absorbed so much information from the doctors that I felt like I had not missed a beat when I was finally able to go and see her. I could not imagine going through this adventure with anyone else then my Rock, Tom
OK, enough with the mushy stuff!
In an earlier post Tom commented on how great Farmers has been. I need to second that with my employer, Cerner. From day one (way back in April when bedrest began) my leadership team has been amazing and more then understanding. Their number one focus has been me and our baby, no worries about work. We are very blessed to not have to add work stress to our plate!
5.28.2012
Stuff still going pretty well with KelliAnne...
The doctor just called us as we were headed out the door to go back to the hospital and gave us the morning update. KelliAnne has gained another 20 grams, which puts her at 110 grams gained in the last 5 days. That is really good. She is now up to 2 lb 6 oz. She has tolerated room air (21% O2) coming through the canula at the lowest level possible, and they increased her caffeine (keeps her from deep deep sleep where she will forget to breathe), and her brady's decreased to only 14 over the last 24 hours. Seems high to me when we are talking about the number of times your heart rate dips dangerously low, however, they said if she was not having them at this gestational age, that would be really weird.
If the doctors are encouraged, we will be as well.
In the next 24 to 48 hours they will be testing KelliAnne off of the canula altogether and just let her breathe regular room air like you and I without assistance.
A few good pictures showing how much she has changed
We love this picture of KelliAnne. We are not supposed to use flash photography because it can stress out little babies, but I accidentally did in this one, and it turned out great. She just looks like a little baby now. She seems to be OK with the camera as well.
Here was another picture we really like. She was waving goodbye to us before we left the other night.
Here was another picture we really like. She was waving goodbye to us before we left the other night.
.. and this one. This was a preemie hat, that is still clearly way to big. I can't decide if she looks like Bob Marley or a chef. Either way, she has options.
5.26.2012
30 weeks today...
KelliAnne hit her 30 week gestation today. That is adjusted given she is not in utero but nonetheless, she is there. We also had good news getting into the hospital earlier today . Her billirubin level was low enough to take her off the lights. I am sure you noticed in the pictures a blue light on her. That business is done, as long as she keeps pooping. Apparently that is how she expels the billirubin.
The other good news is that she has gained some weight and she is actually back above her birth weight. She is still in the 2 lb 4 oz range, but all the way up to 1030 grams. She was born at 1010 grams. She has gained over 2 oz in the last two days. That is because she has handled her milk well allowing the doctors to increase her feedings. She is all the way up to 7 mL of milk every three hours and she has steadily increased every 12 hours. She could be close to a full oz in the next couple weeks at this rate which should help add to her daily calorie intake.
5.25.2012
New Stuff about Preemies we learned
We have been learning quite a bit about the challenges that a baby born this premature faces on a daily basis. They have little hands, feet, arms, legs, hearts, and if that is not enough, little brains. The reason is that some major parts of their brain are not yet developed and were not in the plans until around 36 - 37 weeks. Many of these developments are related to the nervous system. Our nurse explained this like a contract that a baby had, and when they are born early we have 'renegotiated' the terms. When they come out early they have some side effects (clearly) because of this. Here are a couple:
One of the side effects of 'life on the outside' for a baby is that they are used to a tight and confined space with little room to move around. Now they are in a big area and are not squeezed and they will lift and flail their arms and legs quite a bit. This is a sign of stress for a preemie. You want to see them laying with their arms and legs in tight to their bodies, still in the fetal position. Because of that we do a lot of hand containment to make them feel that confinement, we also have pillows and stuff all around her to make her feel there are still some walls around her. When she breaks free of the pillows, we try to get our hands on her as fast as we can.
The other effect of her new living arrangements is pretty major. Babies don't breathe in the womb and aren't asked to do so until about 40 weeks. KelliAnne is breathing room air with a tiny bit of help from a some air into her nose. I think she is doing pretty good considering, however, this exerts a lot of energy which makes it tough for her to gain weight. Her body would be using that energy to grow if still in the womb. The other issue is that the part of her brain that tells her to breathe consistently is not fully developed. No big deal though, she alarms herself, her parents, and the nurse with bradycardia. This started yesterday when her heart rate just dropped from the 150s (normal for a baby her age) into the 60s. Apparently this is normal until her brain development catches up with her required activity of breathing. Luckily she is strong enough to recover and basically wake up immediately and has not yet required the assistance of the nurses. We are told by fellow NICU parents that we can expect some of that in the future, it just happens, but for now to enjoy how she is bringing her heart rate back up on her own. They increased the air pressure on her O2 flow today, which is nothing major as she is still breathing on her own.
It is best to not watch the monitors.... we are still learning.
One of the side effects of 'life on the outside' for a baby is that they are used to a tight and confined space with little room to move around. Now they are in a big area and are not squeezed and they will lift and flail their arms and legs quite a bit. This is a sign of stress for a preemie. You want to see them laying with their arms and legs in tight to their bodies, still in the fetal position. Because of that we do a lot of hand containment to make them feel that confinement, we also have pillows and stuff all around her to make her feel there are still some walls around her. When she breaks free of the pillows, we try to get our hands on her as fast as we can.
The other effect of her new living arrangements is pretty major. Babies don't breathe in the womb and aren't asked to do so until about 40 weeks. KelliAnne is breathing room air with a tiny bit of help from a some air into her nose. I think she is doing pretty good considering, however, this exerts a lot of energy which makes it tough for her to gain weight. Her body would be using that energy to grow if still in the womb. The other issue is that the part of her brain that tells her to breathe consistently is not fully developed. No big deal though, she alarms herself, her parents, and the nurse with bradycardia. This started yesterday when her heart rate just dropped from the 150s (normal for a baby her age) into the 60s. Apparently this is normal until her brain development catches up with her required activity of breathing. Luckily she is strong enough to recover and basically wake up immediately and has not yet required the assistance of the nurses. We are told by fellow NICU parents that we can expect some of that in the future, it just happens, but for now to enjoy how she is bringing her heart rate back up on her own. They increased the air pressure on her O2 flow today, which is nothing major as she is still breathing on her own.
It is best to not watch the monitors.... we are still learning.
5.24.2012
The weekend and leaving the hospital...
Over the weekend Robin received tons of flowers and gifts from our friends and family, including lots of pink clothing. We really didn't have any clothing for KelliAnne other than some gender neutral stuff. Robin kind of anticipated on handling that later, as well as getting some stuff at showers and what not. The St. Louis shower was cancelled while Robin was on bedrest, and I believe will take place some time later in the fall.
KelliAnne did great over the weekend, and she began to move around more and more. We became more comfortable with the hand containment and learned more ways on how we can express ourselves to the baby through touch and sound. We also started reviewing the info they gave us explaining the developmental benefits to this interaction. It is remarkable how big of an impact it can have.
The nurses' job is not only to care for KelliAnne, but to make sure we are part of the care they give her as it is part of the bonding with parents. They want us fully prepared to leave their NICU and take care of her like she was a term baby that had no health issues. We are just trying to soak it all up. On Saturday they had us changing diapers, checking temps, and learning how to help control the temp of the isolette. They also asked us to be vocal with the nurses regarding care for KelliAnne. The nurses are on shifts and change out frequently so we will actually start picking up many clues to what she needs that they are not familiar with. One such clue that we advised our Sunday nurse was that she has better stats when laying on her right side, so she rotated her. The reason was supported by the x-ray that showed her left lung was still not inflating all the way. We knew this but the new nurse did not, so they actually listened to us and let us feel more involved.
Later in the day on Sunday, we left the hospital. They kept Robin there an extra day longer than the normal c-section because we had the baby staying behind. Next to seeing how lifeless and sick KelliAnne was on her first day of life, this was extremely tough. The baby was supposed to come home with us in our plan. We headed home where Robin's parents and my mom were waiting to help us get settled. Robin's mom found our cleaning supplies and restored our home to a condition we had not seen it in for quite some time. We were stunned at how clean everything was. It was one less thing to worry about.
We were back at the hospital within a couple hours and stayed there until late that night.
KelliAnne did great over the weekend, and she began to move around more and more. We became more comfortable with the hand containment and learned more ways on how we can express ourselves to the baby through touch and sound. We also started reviewing the info they gave us explaining the developmental benefits to this interaction. It is remarkable how big of an impact it can have.
The nurses' job is not only to care for KelliAnne, but to make sure we are part of the care they give her as it is part of the bonding with parents. They want us fully prepared to leave their NICU and take care of her like she was a term baby that had no health issues. We are just trying to soak it all up. On Saturday they had us changing diapers, checking temps, and learning how to help control the temp of the isolette. They also asked us to be vocal with the nurses regarding care for KelliAnne. The nurses are on shifts and change out frequently so we will actually start picking up many clues to what she needs that they are not familiar with. One such clue that we advised our Sunday nurse was that she has better stats when laying on her right side, so she rotated her. The reason was supported by the x-ray that showed her left lung was still not inflating all the way. We knew this but the new nurse did not, so they actually listened to us and let us feel more involved.
Later in the day on Sunday, we left the hospital. They kept Robin there an extra day longer than the normal c-section because we had the baby staying behind. Next to seeing how lifeless and sick KelliAnne was on her first day of life, this was extremely tough. The baby was supposed to come home with us in our plan. We headed home where Robin's parents and my mom were waiting to help us get settled. Robin's mom found our cleaning supplies and restored our home to a condition we had not seen it in for quite some time. We were stunned at how clean everything was. It was one less thing to worry about.
We were back at the hospital within a couple hours and stayed there until late that night.
Friday.... big day
On Friday, KelliAnne had remained stable and was actually taken off the respirator on put on SEAPAP. She handled this like a champ, likely due to the steroid shot she received for lung development nearly a month prior while we were in the hospital in Springfield. That turned out to be a very big deal potentially as she was breathing better than many '28 weekers'.
She also began her trophic feedings by a feeding tube directly into her belly and had no resistance. 5 days of this are needed before they can begin to increase her food intake by 1 mL every 12 hours if handling it well. They will do this until she is receiving a normal serving of breast mile with each feeding, while decreasing food delivered by IV. Her dependency on the breast mile and acceptance of it, will be a huge factor going forward as it has developmental nutrients you can't duplicate artificially. I have done the research on this... it's true.
I have focused mainly on the development on KelliAnne so far, but while this is going on, Robin and I have pretty much just sat in the chairs near her isolette and watched her, done some hand containment, and read to her as much as possible. Thanks to my sisters from bringing us lots of books to read to KelliAnne.
We have also tried to catch up on sleep. Robin has a better excuse than I considering she had major surgery just two days ago. I just don't sleep well any more. Robin also is awake every 3 hours to get 'milked' as well so no real continuity in our napping any more. That is preparing us for when baby comes home!
She also began her trophic feedings by a feeding tube directly into her belly and had no resistance. 5 days of this are needed before they can begin to increase her food intake by 1 mL every 12 hours if handling it well. They will do this until she is receiving a normal serving of breast mile with each feeding, while decreasing food delivered by IV. Her dependency on the breast mile and acceptance of it, will be a huge factor going forward as it has developmental nutrients you can't duplicate artificially. I have done the research on this... it's true.
I have focused mainly on the development on KelliAnne so far, but while this is going on, Robin and I have pretty much just sat in the chairs near her isolette and watched her, done some hand containment, and read to her as much as possible. Thanks to my sisters from bringing us lots of books to read to KelliAnne.
We have also tried to catch up on sleep. Robin has a better excuse than I considering she had major surgery just two days ago. I just don't sleep well any more. Robin also is awake every 3 hours to get 'milked' as well so no real continuity in our napping any more. That is preparing us for when baby comes home!
Day 2
Day 2 in the NICU had a lot less drama. Robin was feeling better, the baby was wiggling around and acting more like she should, so we were starting to settle in to what things are going to be like for us until KelliAnne can go home. She had some issues with acid in her blood that they were working on the day before, and the medicine they were giving her actually got the acid levels back into an acceptable range by the end of day 2 (May 17th). She was showing signs that her lungs were also in better condition as they were able to reduce the usage of the respirator and let her pick up some of the slack. Much of this day was spent by me asking tons of questions regarding all of the numbers on the monitors, learning what ranges we wanted to see them in, and we also spent a lot of time doing the hand containment.
They explained to us certain milestones they want to see out of KelliAnne to be demonstrating progress. First, less dependent on the respirator so they can work her up to a SEAPAP machine (exactly like what people use for snoring or sleep apnea), then a canula (not sure on spelling). Other movement they wanted to see was a couple days of stability in her other organs (heart, brain, liver, kidneys) before they would start feeding her. Day 2 went well for this category, so she was getting closer to receiving trophic feedings. 1 mL of breast mile every 3 hours. Trophic feedings are to coat the stomach and let the antibodies from Robin help protect the baby from infection.
I am not a real doctor, but I could play one on TV at this point.
They explained to us certain milestones they want to see out of KelliAnne to be demonstrating progress. First, less dependent on the respirator so they can work her up to a SEAPAP machine (exactly like what people use for snoring or sleep apnea), then a canula (not sure on spelling). Other movement they wanted to see was a couple days of stability in her other organs (heart, brain, liver, kidneys) before they would start feeding her. Day 2 went well for this category, so she was getting closer to receiving trophic feedings. 1 mL of breast mile every 3 hours. Trophic feedings are to coat the stomach and let the antibodies from Robin help protect the baby from infection.
I am not a real doctor, but I could play one on TV at this point.
Milk Man
Robin also started to make milk or 'colostrum' for the baby late on day one that we would deliver to the NICU every 3 hours and they would store in their freezers. When Robin's nurse saw how successful this was so early she explained to us how good this will be for a 'preemie' baby to grow and develop faster and if we have milk sooner than later, it only helps. She had Robin pumping milk every three hours, and I delivered it to the NICU throughout our stay in the hospital. On the first night especially, I would deliver the milk and then spend time with the baby hoping to see her move. At 3 AM on KelliAnne's first night, she started twitching and moving her arms a little bit, and it appeared the effects of the magnesium that had sidelined mom for most of the first day were wearing off of KelliAnne as well.
It was 3 AM so when I started to celebrate in the NICU, I was pretty much all alone but I didn't care.
It was 3 AM so when I started to celebrate in the NICU, I was pretty much all alone but I didn't care.
Magged Up
The baby was born at 8:03 AM and by noon, mom was awake enough in the recovery room to get wheeled in for her first look at our baby. Just a couple minutes before that I went to the recovery room and discussed finalizing a name with Robin. We had two names ready for a girl, and I had become tired with continuing to call our daughter 'it', 'baby girl' or 'baby Race'. We decided on KelliAnne. Thanks to the magnesium, Robin did not remember this until we discussed again later. Luckily for me, I proceed with sharing this info with everyone and Robin still liked the name when she was more coherent later on.
The baby was also pretty magged up according to the nurses, which explained why they were not seeing much movement from her. Throughout the entire first 19 hours of KelliAnne's life, I talked to her and tried to get her to move. I was convinced her eyes moved more when I spoke to her. The nurses told me she probably recognizes my voice and that it would be important to talk to her as much as possible, as well as do 'hand containment' so she can learn my smell. Hand containment is a way to hold a baby that you can not actually lift out of the isollete by putting pressure on their hands, legs, head or bum to make them feel secure and like they are still in a tight womb.
Robin was pretty out of it all day and in too much pain to really visit much that day, but did manage 1 more quick trip to see the baby when she was really coherent later that first day. Robin forced herself through some pain to sit up in a wheel chair just several hours after a major surgery so she could 'hold' her baby the first time. Mom didn't mind much that the baby could not move, just really felt the connection being with her.
Cathy... our 2nd Angel
In the NICU I quicly met Cathy, our first nurse. She was assigned to 'baby girl' for the day. That is what they were calling her because Robin and I had not yet decided on a name. Cathy was intense and nice, and kept me informed her entire shift. 'Baby Girl Race' had a very tough day one, but Cathy never left her side, except to literally jog to the restroom if needed. She refused lunch when the other nurses offered to take over. This was the start of the amazing care the NICU has provided for us and our daughter.
She spent the entire shift getting her hooked up to the right machines, making sure they were working properly and adjusting as needed based on the baby's reactions. There was no movement from our baby the entire day other than breathing and slight eye flutters.
She spent the entire shift getting her hooked up to the right machines, making sure they were working properly and adjusting as needed based on the baby's reactions. There was no movement from our baby the entire day other than breathing and slight eye flutters.
Remembering the 'Hail Mary'
Within a few minutes Robin's team of doctors at this point were running into the room, because the baby had fallen off of the monitor. They advised that an emergent C-section was necessary and that they would need to put Robin under, so I would not able to join them in the room. They had her wheeled out of the room and toward the OR before I could really think of any questions. They didn't have time to answer them though any way.
At this time, though, I remembered our ultrasound tech from the day before that put her lunch off to see Robin.... we have angels.
The plan that Louise had presented the night before was not going as she thought because they had Robin moved out so fast that they did not remember to have someone take me to the NICU to wait for my new baby. I stood in the hallway outside the OR until what had to be the only nurse not involved in Robin's c-section saw me and asked if she could help me. I just let her know my wife was in surgery and I don't know what I am supposed to do now, but I wanted to be wherever the baby would be asap. She took me back to the room we stayed the night in and said that she would have someone come in there shortly to get me over to the NICU.
I sat there and waited and tried to pray the rosary. I could not remember all the words to the 'Hail Mary' so I said a different version of it through the first half until I finally figured it out. About then, Louise walked in.... with the news. She explained why everthing moved so fast, and that within 1 minute of Robin being put to sleep, they had our baby girl out. She did not have a heart beat and was not breathing, but they quickly got her breathing, stabilized, and she was on her way to the NICU. We had a baby girl and that is how I found out. Louise did not know this was a surprise, and almost lost it as well when she saw my reaction.
At this time, though, I remembered our ultrasound tech from the day before that put her lunch off to see Robin.... we have angels.
She took me to the NICU where I was waiting when our baby girl was brought in to her temporary home.
Preparing.... in case this baby comes
I will backtrack briefly to the first night in the hospital. The doctors advised they would have someone from the NICU come speak to us about what to expect should we have the baby early. A NP named Louise came in at nearly 10PM and went through a ton of information that had us spinning. The info included where I would be during delivery (if needed) and where the baby would go, when we would see it, and what to expect the baby to look like. This also added to our anxiety going to bed.
The next morning we woke up about 6AM when a nurse came in to check Robin's vitals. She said the baby looked pretty good through the night and the contractions had spread out and become less intense. All good news. She left us to catch up on sleep as we did not get much through the night. About 45 min later a couple nurses came in and said that the baby was experiencing more dips on the monitor and that the doctor would be coming in. The doctor came in and said they are keeping a close eye on it and that they would also get their 'high risk' doctor involved. 20 minutes later someone from anesthesiology came in and asked questions regarding previous surgery and allergies and said they were preparing 'just in case'.
Within the next 30 minutes, 'just in case' became reality....
The next morning we woke up about 6AM when a nurse came in to check Robin's vitals. She said the baby looked pretty good through the night and the contractions had spread out and become less intense. All good news. She left us to catch up on sleep as we did not get much through the night. About 45 min later a couple nurses came in and said that the baby was experiencing more dips on the monitor and that the doctor would be coming in. The doctor came in and said they are keeping a close eye on it and that they would also get their 'high risk' doctor involved. 20 minutes later someone from anesthesiology came in and asked questions regarding previous surgery and allergies and said they were preparing 'just in case'.
Within the next 30 minutes, 'just in case' became reality....
Let's keep Robin pregnant...
When we arrived at Saint Luke's they explained to Robin their goal would be to keep Robin pregnant as long as possible, even if she was there in the hospital until she reached 34 weeks gestation. They would do this by limiting her movement... i.e. super-strict bed rest as well as continue to monitor the baby and pump Robin with more magnesium to keep the contractions spread out.
We settled in, not knowing what to expect, but we felt good about 1) being in the hospital in our hometown (unlike Springfield), and 2) Saint Luke's has a great NICU in case we did have our baby early.
Robin's parents came in from Saint Charles this night and visited us along with my parents and sisters. Everyone went to bed that night hoping we could keep that baby in Robin a while longer. Robin and I didn't sleep much, just watching the monitors as we could see when she had contractions, and we could also see that the contractions would decrease the baby's heart rate considerably each time they came. The doctors said that this was likely putting pressure on the baby's cord causing the slight dips, but as long as they come back up, we are all good...
We settled in, not knowing what to expect, but we felt good about 1) being in the hospital in our hometown (unlike Springfield), and 2) Saint Luke's has a great NICU in case we did have our baby early.
Robin's parents came in from Saint Charles this night and visited us along with my parents and sisters. Everyone went to bed that night hoping we could keep that baby in Robin a while longer. Robin and I didn't sleep much, just watching the monitors as we could see when she had contractions, and we could also see that the contractions would decrease the baby's heart rate considerably each time they came. The doctors said that this was likely putting pressure on the baby's cord causing the slight dips, but as long as they come back up, we are all good...
May 15, 2012
Fast forward a few weeks.... Robin was on bed rest for about 3 weeks and had a very calm go of it. I was able to work from home as much as needed to help her out and make sure Mom was not up and moving around more than necessary. My job was awesome at letting me work virtual and my team, boss, and other supervisors really picked me up during this time.
On Tues, May 15 Robin was scheduled for a routine visit (she now had weekly check ups on the baby due to the bed rest) to check on the baby's heart rate, growth, amount of fluid etc... Luckily we showed up to this appointment about 30 minutes early as we were already in the building for another doctor appt. By strange luck, the ultrasound tech decided to go ahead and get our imaging started and forego her lunch break. This may have been the biggest sign that God was looking out for us as things were not so great, and every minute counted to help out KelliAnne.
Robin had virtually no amniotic fluid left, but she had also not felt her water break. The tech also noticed the baby was really not moving that much. Her heart rate was fine, but the tech immediately contacted a doctor who had us rush over to labor and delivery. Over at L&D, they let us know that Robin's water had broken, and she was experiencing mild contractions and had started to 'labor'. Robin couldn't feel a single contraction, but nonetheless, they immediately started her on Magnesium to help reduce the stress on her uterus, stopping the contractions. They also informed us that they needed to get Robin stable enough to transport by ambulance to Saint Lukes on the Plaza as she was likely going to deliver the baby very soon.
This did not cause panic for us because the doctor took her time to explain why/how things would end up better for the baby (still unknown gender at this time), but she also shared some risks and things to expect with a 28 week baby. About an hour later, Robin was on an ambulance on her way to Saint Lukes on the Plaza. I met her there.... Luckily my parents had arrived in time to drive me down there as I was not in great condition.
In the beginning...
Let's have a start from the beginning... before KelliAnne joined us in the real world. Robin had some complications during her pregnancy that caused her to be on bed rest starting in late April. Bed rest stemmed from a trip to the hospital while we were on a 'Babymoon' at Table Rock Lake. We spent four days at Cox South in Springfield and that is when the good care of KelliAnne by professionals (on top of her mama) began. The nurses and doctors in their Perinatal Care Unit were outstanding. Even when there were nothing but question marks as to what was going on, they made us feel comfortable and confident in a good outcome. Unfortunately, they did not have much of an idea about what caused our need to visit their hospital, but when they were confident that Robin and the baby were stable they sent us home with a map and list of every hospital between Springfield and KC. That was a nerve wracking drive home, but we made it safely.... with tons of flowers that had been sent to Robin while in the hospital (thank you to all who sent us flowers and gifts). Also, a thank you to everyone that thought and prayed for us during the 'scare' we had back in April.
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