Avery & ASD

 In a follow up weight check for Avery, Dr. Wallace listened to her and heard a murmur consistent with a septal defect. This meant that there was a hole somewhere between the cambers of the heart. The chambers keep oxygenated blood and deoxygenated blood separate, if they are mixing than the baby does not get enough oxygen to organs and tissue.

We had just been through Neely's hip issue and now this. Geez. She did a pre Ducatal and post Ducatal oxygen saturation check to make sure it was not causing her respiratory distress. Her saturation was normal and she wanted us to follow up with a cardiologist as soon as possible. They were able to fit us in the next day. We we scheduled to do a EKG to look a the electrical conduction of the heart to make sure there was no arrhythmia's and an echo cardiogram to look at the structure and blood flow of the heart. Thank God, we were scheduled with the perfect doctor for us. Dr Case attends all the echo cardiograms to explain what they are seeing as they conduct the study.

Avery getting her EKG done

The Lord was showing us his grace that day because even though Avery did have a moderate sized hole between the atria of her heart (called ASD, atrial septal defect), Dr Case explained to us that although an abnormal finding, this was not going to cause her any problems in the future and would hopefully close on its own. We went back for a follow up at six months and it had not closed. But Dr. Case did not think any intervention was necessary. We will go back when Avery is 18 months old to see if it has corrected itself.

Sacral Dimple

 Also during our NICU stay we learned that Neely (poor little bear!) had a sacral dimple that would need a ultrasound to confirm that the dimple was closed and the spinal cord was not teathered.  A dimple, which is located below the tailbone, could indicated that the spinal cord never formed correctly and is tethered.

 No one ever said the word "spinal bifita" and it never occurred to me at the time that this  was what they were worried about. On our last day the nurse practioner looked at it and thought that it was closed and didn't think that an ultrasound was needed. However, when our pedi looked at it she could not say for sure that it was closed and wanted us to get an ultrasound just to make sure. A week later, after what seemed like 3 million appointments, we took  Neely to Cooks for a spinal ultrasound. The ultra sound was quick, easy and over in 5 min ( took me longer to get the the girls in the building). We waited anxiously for the results the following day. Our sweet pedi knew how worried we were and called us at 6:30pm on a Friday night to report that the sono showed no thering. Woohoo! Another crisis averted.

Pavlik= :(

Neely, formally baby A, was breech upon arrival.  I was told when we were in the nicu that due to her presentation that we would need a hip ultrasound to check for congenital hip dysphasia. Apparently this is found in infants who are breech, because they are unable to tuck themselves into head down position, not allowing the hips to flex and the head of the femer fit in snugly with the hip socket. Without the head fitting snugly the socket it does not form the way it needs to be. This creates a shallow socket where the hip can dislocate easily. Below is a picture of this.

  We got the sonos done and since I never heard back front the clinic I thought we were in the all clear. Wrong. When I went for the girls 2month appointment I asked our pedi about them. When the results were send over it showed that her right hip was shallow and could potentially cause her hip to dislocate from her joint when she got old enough to walk. We were sent to an orthopedic doctor how looked at the scan and then decided that she needed to wear a brace to correct the problem. Enter pavloc brace. The contraption looked simple enough, but after putting it on her and explaining that we had to leave it on 24hours a day for 3 months I started crying. I had never heard of this or see a baby in this and the thought of my poor child being stuck in this contraption for three months made my heart break.

After about a week we got used to it. However Neely didn't seem to mind it all. You could tell at first that she would get frustrated because she could stretch out her legs, but that only lasted a day. Mom and Dad finally adjusted too! Diaper changing and bathing got much much easier. We learned to bathe her with a wash rag around the brace. Thank goodness it was summer so that we could dress her in onezies, rompers, and dresses they all worked really well over the brace. We also got her some stinking cute leg warmers!

After the first month we went back to make adjustments and we were told that she could have it off one whole hour a day!! We were elated! Neels got to take good baths (which she loved!) and we were able to wash that stinky brace, finally! The bad part about this was, now everyone could see the brace so we got lots of "whats wrong with her?" and "what's that?" You would think that with all the inconsiderate comments that I got throughout my pregnancy that I would be used to this type of questioning, but I was not! Fortunately for the Neel Bear she was none the wiser!

Three weeks later we went back and another sono which revealed that her socket was improving, but not completely formed. We were able to take it off for about 4-6 hours a day.

She loved her brace-free time! She loved rubbing her feet together, since she was unable to in the brace. While out of her brace we worked with her on rolling over, since sister had already accomplished this. After a couple of weeks she caught up to sister and loved rolling around on the floor. 

July 10th, at 6 months our Bear had an X ray to see if there was any improvement (could not do sonos anymore due to her age).  Dr. Messer came back with great news! NO MORE BRACE!! YAY! Right hip was no longer shallow! Woo hoo!

Update: Had our one year appointment with Dr. Messer last week and repeated XRAY. Everything looked great! No more ortho appointments!












http://www.hipdysplasia.org/developmental-dysplasia-of-the-hip/child-treatment-methods/pavlik-harness/

Late preterm

Late preterm. Ugh. Lets start  with that.  U.g.h. At 34.5 we found ourselves in this special category of preterm. We were not necessarily micro premie (24 to 33 weeks), however, we were far from term. As a labor and delivery nurse when I have previously delivered infants at this gestation I always thought they would stay in the nicu a couple of days/weeks and go home "normal. " I was sorely mistaken. Late preterm infants, our special category, come with a wide assortments of problems. Although closeish to the magical 40 week mark we still fell short. 

This special category came with lots of appointments, follow ups, and protection from germs with quarantine proportions. The girls had bi weekly weight checks not only because they were so small, but they needed to make sure they were not working too hard, burning off calories, while they ate. We had strict instructions to only allow them to eat for 30 mins. If they took longer to eat, than they were burning off more than they were taking in. This meant that we had special "techniques" to get them to eat and burp and pray that they had taken enough and would not spit it all back up.  That hurdle did not compare to the poor breastfeeding and GI problems . We had several phone calls and visits to the lactation consultant. Hours and hours and hours and hours (you get the picture) of pumping. Trips to a pulmonolgist for synergis shots because the girls were at risk for rsv because it could be life threatening since they had immature immune systems.  Some of the appointment I had help. Others I did not. Loading, unloading, carrier#1, carrier # 2, stupid huge stroller and praying  I remembered everything x2.  Finally about 3 months of age it starting turning around.

Awww, where has the time gone??

The girls are now 9 months old!!! Every week I thought about updating the blog and every week it seemed like there was something to do in our spare time... like sleep!! Soo here is my attempt to back track!

Home!!!Crisis!!

Jake and I could not wait to get the girls home, however, once we were home we quickly forgot why we wanted to come home so badly. Both of our families live out of town and we would not have help until the following day.  When you stay in the NICU they provide you with bottles, nipples, wipes and diapers. We were able to take all of the supplies home with us that they had stocked us with during our stay. This included 3 60ml single use graduated cylinders and 2 little normal flow single use nipples. When we arrived home I grabbed the remainder of the bottles and nipples that we brought home and made the girls bottles. They both ate well and went back to sleep. I soon realized afterwards that the next feed we would not have any bottles. I got the bottles that we had registered for and started to sterilize them. However, as you can see we ran into a little problem. Nipple size and flow were WAY too fast and big for the girls. They both started choking and coughing and spilling the breast milk everywhere.

It was 10pm, neither one of us had gotten any sleep the last10 days and were both emotional wrecks. I was still hurting from my c/s and Jake had not done any good treatments escorting visitors to and from the NICU, we were not in good shape. We had NO way of feeding our babies! I completely broke down. WE ALL COMPLETELY BROKE DOWN. Jake said that we could run to the store, but the thought of being alone with two screaming babies and no way to feed them was way too much for me to handle. After 20 min I thought maybe we could just re-use the 2 nipples that we already used. We called the NICU and the charge nurse told us that we could just re-sterilize them and could use them a couple more times. We grabbed the used bottle and nipple from the trash, and boiled them  (yes, this sounds terrible, but at the time was our only option, PLEASE DONT JUDGE!!) SO, after an hour of 4 people crying we were able to feed our poor babies! Crisis #1 averted.  The next day when help finally arrived, Jake went to the store and brought back some bottles that were more conducive for feeds. Woo hoo!

First 10 days- NICU

Monday January 16th- Baby girls are here!! After my recovery was finished I was taken in my stretcher to see the girls. I don't think anyone can prepare you for the first time you get to see and touch your baby. The hardest part is not being able to hold them without monitors and wires.

Avery

Neely

Tuesday- Wonderful day! Neely was taken off her CPAP, contiunous positive airway pressure, (which helps her breath easier by pushing air into the bases of her lung bugs leaving them open so that she does not have to work at doing it while breathing), and placed on a little oxygen. Avery and Neely both needed IVs to help them stay hydrated and had a gavage tube in place for feedings. We were able to hold both girls and have some skin to skin time! I have been able to pump more colostrum for the girls feedings.

Avery

Neely

Wednesday- Rough day, when we arrived to see our sweet girls Neely's IV infiltated (stopped working) and they needed to restart it. I was able to start trying to breastfeed Avery while daddy stayed with Neely while the team of nurses tried restarting her IV. After 5 sticks and tearful mom and dad, Neely was completely stressed out and needed to be put back on CPAP. The stress caused her to breathe faster than her normal rate which resulted in her working too hard to breathe. As a nurse I understand that restarting the IV was completely necessary and that sometimes it takes more than one try to start IV's, but as a parent it was one of the most grueling things. It was very hard watching your poor baby struggle. Dr. Whitney ordered a stat chest x-ray that showed infiltrates and they started her on two days of IV antibiotics. Meanwhile Avery had done so good keeping her body temperature stable that they decided to put her in an open air crib and remove her pulse ox monitor. They were still using the NG in her nose for her feeds while I pumped. It was a very hard day celebrating one child's improvements while tearfully watching the other struggle.

Thursday- Much better day! They have removed Avery's feeding tube and IV and we are breastfeeding her and bottlefeeding her breastmilk. She is tolerating her feeds well and have increased the amount that she is getting. Neely had a repeat chest x-ray that still showed lung infiltrates and are continuing antibiotics. Neely is having a hard time tolerating her feeds but has improved since giving her breastmilk instead of formula. They are watching the bilirubin levels closely as they continue to climb but for now are still in a normal range. Neely seems to continue to bat at her CPAP tubing and has dislodged it 3 times within 30 minuets. The nurse practitioner decided to take it out and see how she did without it thinking that it was irritating her more than helping. After removing it, Neely was able to keep her oxygen levels up above 92% without even requiring supplemental oxygen!! They also moved her feeding tube from her mouth to her nose! Mommy and Daddy having a much better day!

Friday- Wonderful day! Both girls are doing great! Neely did wonderful throughout the night and still does not require any additional respiratory support. With the help of the lactation consultant we were able to start tandem breastfeeding today. Avery is actually feeding while Neely is still getting her feeds through her feeding tube but is able to be on the breast while doing so. We are able to start giving Neely bottles and once she is able to take feeds for 24 hours and tolerate them without needing the tube than it can be removed! Bilirubin levels have continued to climb but still just under the normal range.

Saturday- We have some blue babies! Both bilirubin levels have gone over the normal range so they have both been started on bili lights. Neely is down to 4lb 10 oz and Avery 4lb 4oz. Still breast and bottle feeding both girls.

Neely

Avery

Sunday- Neely gets her big girl crib and IV and NG have come out!! YAY! Both girls bili levels have dropped back down and they are off the lights! We have officially graduated to the NICU step down unit and now they just have to pack on the pounds! Neely weight dropped another ounce so we are watching it closely and praying that they start gaining so we can all go home.

Monday- Another rough day. Today was rough only cause Jake and I were told that we could no longer stay in the hospital in postpartum. I was not a happy camper. I had been able to breastfeed and bottle feed the girls around the clock and going home meant that I was not going to be able to do that 30 min away at home. But on the bright side Neely did not loose anymore weight, while Avery lost another ounce. Avery passed her hearing test and Neely only passed it in one ear, they reassured us that this could be normal and will repeat this test tomorrow.

 Tuesday- Wonderful day! Neely gained 3oz and Avery gained 2oz!! The girls also passed their car seat test which means that they can safely be transported home in their car seats without having any apnea or bradycardic episodes. Another step in being discharged! Neely passed her hearing test!

Wednesday- Woo Hoo! Neely is up to 4lb 13oz and Avery 4lb 7oz. Dr. Whitney is happy with their weight gain and we received rooming in orders! This means we are moving back up to the hospital and will have the girls in our room to make sure the transition from the NICU to home goes as smoothly as possible!!

Thursday- We received our discharge orders!! The girls got an injection called Synergis which helps to prevent RSV, due to the fact that they will both be at risk due to their prematurity. Both girls are  very tiny in the car seats! Made us both sooo nervous getting them home.

playing catch up

I can not believe that it has been 7 weeks since our girls have made their grand entrance!! I have soo much to write about, I am pretty sure it might take me 7 more weeks to get it all down!! The first 10 days were crazy ups and downs in the NICU. But on day 10 we were on our way home with our girls!! After that the weeks have flown by, mostly sleepless, but have been fast nonetheless. Hoping this week I will be able to get it all down before it escapes my crazy mind!