Part 2 - Amber's story

 

Part 2

 

Amber was in the NICU for a week. I was discharged on the 5th day (my OB let me have an extra day in the hospital to be closer to Amber) and that is when it started getting "fun". We live about 30 minutes away from the hospital and I was not allowed to drive for 2 weeks (well, I was planning on giving it 10 days before I started driving...that is about all I could take of being carted around and losing my independence!). However, I did not want to leave Amber for long periods of time.

I came home on the night I was d/c'd from the hospital and got some clean clothes and spent some time with Nathan. I had only seen him once in the past 5 days and I really missed him. He was not allowed in the NICU and he got really antsy being in my hospital room, so it was better for him to be out having fun and being spoiled by a family member. It just took a logistical planning to get everybody where they needed to go.

The next few days I spent up at he NICU. I was able to get a ride to the hospital early in the morning, Dan would spend the day with Nathan then drop him off at a grandparents house and then he would come up to the NICU with me. We were able to get a parent room in the NICU, so we could spend the night at the hospital, which was wonderful. It was basically an on-call sleep room with a shared bathroom, but it was surprisingly nice. This way we were able to walk down to her "pod" and feed her in the middle of the night. She seemed better each day however she still had tachypnea (fast breathing) which also seemed ot be improving each day.

 

 Each day the CXR looked about the same, but it meant there was no reaccumulation, however the Dr. wanted ot see some of the residual fluid disappear before he was comfortable discharging us. He also wanted to see her respiratory rate decrease before we went home. Lastly, he wanted her to be on full feeds (basically, she needed to take 2.5 ounces of food every 3 hours) to ensure that the fluid would not re accumulate. Since the Chyle is formed form the fat in a baby's diet, it should have reaccumulated if she was eating as much as they were force feeding her! We wanted what was best for her, but we were ready to go home and with our backgrounds could easily keep a close eye on her respiratory status at home.

After a week in the NICU we finally got transferred to the Special Care Nursery. This was one step closer to going home. The Special Care Nursery was really nice. Each baby had there own private e room with bed for the parent, a recliner, refrigerator and bathroom. It was a mini hotel room. She continued to be monitored while in SCN but I had more responsibility as far as taking care of her, which i was thankful.

 

 I was really having a tough time getting her to eat as much as they wanted her to take. I unfortunately, for some reason, don't make more than 1 ounce of breast milk every 3 hours (that is combined from both breasts). I had the same issue with Nathan and had the same issue this time. It didn't matter that i nursed her for 20 minutes on each side, then pumped, ate well, drank 100 plus ounces of water a day, took fenugreek, drank Mother's milk tea 4 times a day, applied warm packs ot my chest or took Reglan (supposed to help mothers with low milk supply). Therefore, we were having to supplement her with formula and she would just get so tired she would only eat about 1.5 ounces.

This was really hard for me, because I knew if we could get her to eat enough they would probably let us go home, however you can't force feed a baby if they are a sleeping limp rag doll in your arms!

Amber had pulled her NG tube (feeding tube) out a day earlier and they were trying to avoid putting it back in.

Luckily, after a few days in the SCN she was eating to enough and the chest xray had been unchanged for days, they told us we could go home!!!!

 

It was funny to us, but it was a Friday around 1pm when the Dr. told us we could go home. However, we had just sent Nathan to my mom's house so he could take a nap. We asked the nurse if we could stay until he woke up and my mom brought him over to the hospital. Here we had been begging ot leave and then we had to ask them if we could stay until evening time. Funny in retrospect!

 

 Here is our 1st family photo as 4!

Nathan was totally unimpressed with Amber. He payed no attention to here what so ever! However, it did upset him when she started crying on the way home.

 



This has been Amber and my spot everyday during Nathan's nap time. Dan calls from 1pm-3pm NAptime for the whole house! Dan has never been able to sleep during the day so he is able to get alot accomplished while the rest of us are sleeping!

 After we had been home a few days, Nathan starting paying more attention to the baby. He loves to give high-5's and Amber had her hand up in the air, so he thought she wanted a high-5! He was so cute going over and touching her hand.

Then he had to clap after he gave her a high-5! He was very proud of himself!

 

 

So far, we have been adjusting pretty well to our new family compilation. It is much tougher having 2 than when we just had Nathan as a baby. Nathan is a great sleeper at night and wakes up happy, early and ready to play. He sdoes not understand that we are exhausted because Amber has her days and nights mixed up. I have been learning to function in a constant state of exhaustion. We also are trying to figure out a feeding schedule that works best for us. I am still nursing her then supplementing with formula and then at night I pump and feed her a bottle. It is still much more time consuming than just straight nursing, but I will never make enough milk to just nurse her and i am learning to be thankful I get to nurse her at all an have that special bonding time.

 

Nathan has definitely noticed something is different since we have had Amber home. He has been more needy of us and has more meltdowns than he used to. Luckily, Dan has 1 month off from work and has been home to help me tremendously with Nathan. Basically he is caring for Nathan and I am caring for Amber. IT is a man-on-man defense! I am still not sure how I am going to handle it by myself when he goes back to work. At least he only works 3 days a week, however they are 14 hour days.

 

We are truly thankful and blessed to have had as many people praying for us that did. Prayer is so powerful and we serve such mighty and loving GOD. He blessed us greatly with the wonderful outcome for Amber. We were so scared we were going to be in a very different circumstance right now when we first heard of her issue, but with all of the prayer and God's mercy we are home and only able to complain about being tired and I will take that!

Amber's Birth Story
(lots of reading but there are pictures towards the bottom!!)

 

September 27th, 2012 will be a day forever ingrained in my memory.

It started as just a normal day. Dan had to go into work so Nathan and I had the day to ourselves. I had a sono scheduled at 10:30am that my OB had ordered the previous week because I was measuring 3 weeks ahead of schedule. It was just a sono to see how big the baby was going to be. After the sono I had my normal 37week OB appt at 11:30. I knew this would be a long morning for Nathan so i packed him lots of snacks, toys and books (oh, how the boy loves books!!)

When I scheduled the sono appt the previous week the sono tech strongly suggested that I not bring Nathan or that I have someone with me to watch him. Therefore, the plan was for Dan to meet us at the hospital for the sono then he would go back to work.

Before I left the house I packed an overnight bag out of the blue, i figured since I was 37week I should start carrying an overnight bag with me.
 

We arrived for my sono at the same time as Dan. He informed me work was crazy busy. We went into the sono and Nathan was perfect, he just sat in his daddy's lap the whole time. We were enjoying watching our baby on the screen when the tech said she noted some fluid around the lungs. Well, everything went really fast from there on out. We finished up the sono and she told me to go over to my OB office ( down the hall) and she was going to send a copy of the sono to her personally and promptly. Well, since Dan and i are both in health care we know things do not usually happen quickly unless it is important or urgent. However at this point we still thought there would be nothing to do except watch the fluid. Therefore, Dan went back to work since it was so nuts over there.

I saw my OB and she had already scheduled an appointment for me to see a Maternal Fetal Medicine Dr. at 1pm that day. I asked her if I could reschedule for the next day since 1pm is Nathan nap time and he was starting ot get a little fussy and she firmly said No.

Nathan and I had 45  minutes until my next sono appt so we went to the cafeteria for lunch. I called Dan to let him know I had the sono at 1pm. He said he would try to  make it back to the hospital I was at in time for the sono.
 

I had a hard time eating lunch b/c of nerves. Nathan must have sensed something was wrong b/c he would not eat lunch either.

We headed up to the sono appt and thank goodness Dan made it in time.

The tech came in first did a few measurements and then the Dr. came in to do his own sono on me.

He looked at the baby for what seemed like forever. We can read sono's enough to know he was studying the lung and brain very closely. That scared us both to death, thinking there was something wrong with the baby's brain as well.

Dr. Reinhardt then stopped and talked to us and this is when the tears started flowing for me. He said there was significant fluid around the baby's lungs. He went on to say that there were 2 possible scenario's for the fluid. The 1st scenario was the worst scenario.......Hydrops. Hydrops is a disease that is diagnosed by fluid accumulation in 2 or more organs. Pleural effusions are usually present. There is a link below if you are interested in a further explanation.

 

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0004561/
 Hydrops is almost always fatal and I have seen several of these babies at owork and none of them survived.

The 2nd scenario is that it was a chylothorax. Chylothorax is build up of Chyle that is drained from the lymphatic system and into the pleural (between the lung adn chest wall) space. This scared us to because it is almost always associated with other abnormalities. The treatment for chylothorax is long and tenuous. THe babies have to be on a special fat free formula and can not have breast milk. The fat from their diet is processed through the lymphatic system which in this case is not working properly and then drained into the pleural space.

The tears started flowing freely as he was explaining the 2 scenarios. He did reiterate that he did not see any other organs that were affected and nothing drew his attention to any other abnormality.
He then went on tot tell us that if the fluid was from developing hydrops we did not  need to take the chance and wait any longer to deliver the baby. He said even waiting a few days could be risky.
He was very nice and explained everything to us but we were still in shock. He then left the room to go talk to my OB, Dr. Speight. He came back a few minutes later and said she agreed the baby needed to be delivered today. They both wanted the baby delivered soon mainly because it was still day time and there were more neonatologists and adequate staff to be present in the delivery room. No one was sure how sick the baby would be at delivery so they wanted as many resources available as possible.

Thank goodness my brain was on overload and I was not processing everything very well, because with the jobs Dan and I have we know way too much about every bad possible scenario. I think the speed of how fast everything was happening saved me from a nervous breakdown!!

We were then sent back to Dr. Speight to talk to her about delivery options. We sat in her office and she said that my cervix was very unfavorable for a vaginal delivery and even if she did induce me I might end up needing c-section anyways.She also was not sure if the baby would tolerate labor, since we were unsure of the severity of the fluid around lungs. Her biggest concern was that she wanted the baby born when there was plenty of NICU dr's and staff available and that was guaranteed with a urgent c-section. Dan and I decided that we wanted what was best for the baby so we opted for the c-section. She then sent me downstairs to be admitted to labor and delivery.
I called my mom to come and pick of Nathan. Poor thing, he had been with me all day and really had done good. He even took a nap in Dan's arms during the 2nd sono.

 



 

Here we are in labor and delivery. I said bye ot Nathan for the next few days. Not sure how I was smiling.

Everything happened so quick. I had last eaten at 1pm so thought they would make us wait 6 hours before anesthesia would do my epidural and the surgery, but they said since it was urgent it did not matter how long it had been. This scared me to, since in medicine, you only start jumping through hoops (like skipping "rules") if it is serious. By 4pm they had my epidural in and were starting to take me to the OR.



 



 

Before I knew it they were rolling me into the OR and getting ready. I started to feel really gross and sick at this point. They had me laying flat and it was so hard to breath and I was so nauseated from the drugs. I just wanted to sit up so badly. They finally gave me so zofran and that helped my nausea.At this point the NICU neonatologist started talking to me telling me he was going to intubate the baby at birth and I started tearing up agian. I asked if she even was allowed a chance to breath on her own before he intubated her and he said yes.

A side note, we decided not to find out the gender of our baby so that is what I was trying to focus on as I was lying on the table was finding out if we were having a girl or boy!!!

The began the surgery and apparently I had a significant amount of polyhydraminos (extra amniotic fluid). My OB said it looked like a tidal wave coming out! She thinks this is what caused the baby's pleural effusions.

Dan watched the whole surgery and was telling me when they were getting close to pulling the baby out. I was really starting to hurt at this point. I think I had some hot spots in my epidural.

Finally they pulled baby out and Dan told me it was a girl!!

She started crying immediately and my OB passed her to the NICU team.

 

At this point I really started to feel some pain as they started to "put me back together". I felt like someone was squeezing my bladder as hard as the could and jamming down into my private area. After a few minutes of this and me squirming in pain all over the table, my Awesome OB stopped the surgery until anesthesia gave me more drugs. Ahhh...much better.

A few minutes late the NICU team was taking my baby girl up to the NICU. Thankfully she was not intubated but she was on CPAP. I saw her as they rolled her out the door for a whole 3 seconds. Dan stayed with me while they took her upstairs.



 

Dr. Speight and I after the C-section. She is awesome and Dan and I really respect her. She also is a runner and pretty laid back, so we have several things in common!

 

After surgery I was taken back to my observation room in Labor and delivery and actually ended up spending the night in there because they did not have enough nurses on post partum.

 

At this point Dan went upstairs to the NICU to check on Amber. He reported back that they had drained 90cc's (3 ounces) of fluid out of her chest. He said she was still on CPAP but they had started to wean it down.

 

The NICU Dr. came in an hour later and told us that right now she was doing OK but he expected that the fluid would quickly re accumulate and he would most likely need ot put in chest tubes to drain the fluid and he talked to us about putting in UAC/UVC lines (central IV's that go in her umbilical cord). Again, I felt so disconnected from her that I was not that upset.

 

A little while later they wheeled me up to the NICU so I could see her. 



 

Here is the first time I got to see my baby girl. I felt disconnected from her when I saw her. She did not seem like my baby, I felt like she was just another NICU kid. Therefore, I really did not get emotional over seeing her in the NICU. It took me several days to start feeling a connection with her.

 

Dan and I decided he should go home for the night and get some rest. Plus we needed stuff from home since we were a tad unprepared for all of this!

Early the next morning they moved me to post partum. I was exhausted, I literally had not slept more than 20 minutes at a time the previous night. IT was too quiet in the room (I have to have white noise in order to sleep) and i kept waking up to pump.

My epidural was being changed to a "walking epidural" that morning and I was glad to be able to get out of bed. We went to the NICU and discovered she had been weaned off of the CPAP and was on room air!! What a miracle. The chest x-ray that morning did not show any reaccumulation of fluid, however there was still some residual fluid left.

Unfortunately because of the rules I was not able to hold her until the next day.

 



I was able to do kangaroo care with her on the 2nd day and it was wonderful. I finally started to feel a connection with her.

She was in the NICU for the next week. The Dr's were afraid her fluid would re accumulate and she would get sick in a hurry, so they wanted to keep a close eye on her.

 



 

 

 



 

on the 3rd day they let me start nursing her. I Will do a separate blog on my breast feeding issues. 

Doing mommy duty by changing her diaper!

 

 



 

I will end here for now so you do not get bogged down with all the reading. I will post part 2 on her NICU stay and coming home soon!!