Happy 17 months boys!
As I have mentioned before, the boys needed to get Doc Bands to help reshape their heads. Both boys have what’s called Plagiocephaly and Brachycephaly. This effects a large portion of twins due to limited space in the womb and a lot end up needing the bands . I knew Hayden would need one the first second I saw him, he was positioned very low in utero and didn’t move positions at all throughout the entire pregnancy. Ian on the other hand wasn’t nearly as bad but still needed one.
The boys got their Doc Bands a week ago and are quickly adjusting to life with a band attached to their head. They are supposed to wear the bands 23 hours a day with only 1 hour off for bath and to clean the band. So far we haven’t had a full 23 hours in the band. At first you are supposed to check them every 3-4 hours and if there is any redness leave the band off until it goes away. Well we’ve had some issues of getting really red and some skin breaking. But we have had each issue addressed by cranial tech, who we are using.
The boys weren’t too sure about the bands at first, but were great and didn’t pull on them or try to take them off or anything.
They are sleeping in the bands and honestly, we expected them not to sleep well the first night or two. I don’t think it even phased them! They slept fine with the bands on.
The boys sure don’t let the bands keep them from playing. They love to play in their jumperoo and walker and won’t let that band stop them.
The bands are just a white plastic and very medical like. So to make them a little more friendly and pleasant looking, we added a sticker to the back of each band and their names on the front so we can know which band belongs to each boy. The sticker says “Monkey See” on one and the other says “Monkey Do”…
There is a company in our area that does car wraps called 360 Wraps and they have started doing wraps on Doc Bands and other medical prosthetics for kids. They started out doing a few and it got so big they decided to start doing a once a month party where families can come and get their bands wrapped for free. We missed the April part because we got the band the same day as the party, so we are going to go to the May party and get their bands wrapped. I’ll post pictures once we get them done.
Like I mentioned earlier, there have been some issues with skin readness, rubbing and even skin breaking from the bands. Usually its not that bad and typically clears up in a short period of time. Well, I got Hayden up this morning and took his band off and this is what I saw…
This is what happens when you have a stomach sleeper and his face is pressed against the band all night. It has cleared up throughout the day and looks much better but we are leaving it off until it completely fades away.
We went for our weekly adjustment and there has already been some improvement in both of their head shapes. Both of their heads have grown a good amount so we had to have the bands adjusted so the growth will be redirected in the right ways. We will go back weekly for the duration of treatment and hope to continue to see improvements like we did today.
Our little Hayden had a rough go at the beginning of his life. He and his brother were born right at 37 weeks, which technically considered full term for twins. They were diagnosed with intrauterine growth restriction the day they were born…they had basically stopped growing in the womb and it was time to get them out.
When they were born they were very small for their gestational age (4lbs 14oz and 4lbs 11oz) and when you mix that with the fact that they were born right at 37 weeks (37 weeks is the cut off for being premature), they had some of the issues a premature infant or an infant with low birth weight would have.
Within about 10 minutes of his birth he started showing some signs of respiratory distress.
He was grunting, retracting (where the space in between/below his ribs sucks in with each breath) and breathing somewhat fast. Ian was doing a little of this as well, but not as bad.
After we got to see them and hold them for a few minutes they took both boys to the nursery to be assessed and observed. It is normal for infants to go through a “transition” phase after birth and most infants do fine with this while some, especially those in the situation as our boys, don’t do as well. They had a more difficult time getting rid of the fluid in the lungs and this is what they suspected was the problem with Hayden and Ian.
Within 6 hours of birth, the pediatrician decided that it would be best for him to be in the NICU, even if it was just overnight to be observed. So the nurse brought him to my room so we could see and hold him again before being taken to the NICU. It was so good to see him and hold him, that was my first time to hold Hayden.
Ian, on the other hand, was doing great at this point, he had made it through the transition phase and breathing much better. He did have low blood sugar at birth but after feeding him it resolved. He had to have his blood sugar checked before he ate the next three feedings, per protocol, and those were great.
Later that night Ian was released from the special are nursery to the regular newborn nursery and was finally able to come be with us.
When Hayden was taken to the NICU they did a chest xray which showed some signs of premature lungs. He was placed on oxygen and a tube was placed in his mouth that went into his stomach which was “venting” air from his stomach…this helps with difficulty breathing sometimes.
The next morning (Friday) I was finally able to get out of bed and hobble into a wheelchair so Jonathan could take me down to the NICU to see our boy. By this time, he was no longer on oxygen. When I got in there and saw him, I immediately knew he needed to be back on the oxygen….I’m a respiratory therapist and this is what I do for a living.
I worked in a NICU and with babies just like mine. He was working too hard to breath, he was grunting and breathing way too fast (about 70-80 times a minute).
The doctor came over and talked to us to give us an update, one which I took with a grain of salt since everything he said went against everything I knew was wrong. He said Hayden looked great and will start to bottle feed him later that day.
The whole time he was talking I was thinking, “what baby are you looking at? My baby is the one right in front of you that’s showing signs of respiratory distress and needs to be back on oxygen… but most certainly should not be fed by a bottle because he’s breathing way too fast.”
By the time we went to see him Friday night he was back on oxygen and breathing even faster, and was moved into a different part of the NICU.
Saturday morning the nurse practitioner came to my room to give us an update on Hayden. She said when she went in to see him early that morning, he had started to require more oxygen overnight and was breathing way too fast, around 90-100. She got another chest xray and this time it showed a pneumothorax, which is where air leaks out of your lungs and into the space between your lungs and chest. He had a small to medium sized pneumothorax in his left lung and right lung.
The one in his left lung required a needle aspiration, which is where they insert a needle into his chest in between his ribs and the air leaks out. The one in his right lung was small enough that they didn’t need to do this.
After they do the needle aspiration they placed him under an oxyhood with 100% oxygen to help “seal” up the hole where the air was leaking out. An oxyhood is a plastic dome that looks like a bubble that goes around a newborns head. When they first put him in the oxyhood, they could only find a large size and it was way to big.
He likes to have his hands up by his face so he kept finding a way to get his hands up under the hood and by his face, which kept pushing the hood up and out of place. He was miserable with that thing on.
Later that night they found a smaller hood that actually fit him. This just made him mad because he couldn’t get his hands up by his face. Did I mention he loves putting his hands by his face! We called the oxyhood his astronaut helmet.
Sunday and Monday were pretty much the same for Hayden, his little body just had to heal and it takes time.
His chest xray on Monday morning showed that his pneumothorax’s were healing and he was doing better. He still had a high respiratory rate and still working hard to breath but he was doing better. Throughout all of this he was receiving formula through a tube into his stomach, since he was breathing too fast to bottle feed.
He remained in the oxyhood until Monday afternoon when he was able to be taken out and put back on a nasal cannula to receive his oxygen.
Not only was Hayden happy but Mommy and Daddy were happy to have him out of that hood because that meant we could hold him! And since myself and Ian were being discharged that day, it was great to get to hold my baby before going home…and knowing he won’t be as miserable.
It was also later that night, Hayden was able to be fed with a bottle… which he did with great skill!
Tuesday and Wednesday we were lucky to have two grandmothers who were willing and waiting to watch Ian at home so we could go visit with Hayden at the hospital. When we got their on Tuesday Hayden was still on the nasal cannula but didn’t have any oxygen on, just a little air flow to help with his work of breathing.
He was maintaining his oxygen saturations on room air so the doctor said we can take off the cannula. He remained doing well and the Dr. said he has to stay for 24 hours after being off oxygen for observation. He was trying to decide if he could come home on Wednesday or wait until Thursday.
We told him as much as we want him home, we would rather be safe and make sure he was ready to come home so it would be ok if he wants to wait until Thursday… he ultimately wanted to wait until Thursday too so we started getting everything ready for discharge on Thursday. He was still eating well from a bottle and that was another goal he had to meet to come home.
Wednesday we got to feed him, he got his circumcision, had his car seat test (babies have to have that to be discharged from the NICU to make sure they don’t get too stressed out being in a car seat) and he had his hearing test.
All of those went great and Thursday, one week after his birth, we got to go pick him up!!
We were so excited to get to pick him up and bring him home to be with us and his brother! He has been home for 2 full days and it is amazing to see how much he has changed in that short amount of time.
He is already more calm and realizes we aren’t out to get him. I’m hoping he knows that we aren’t going to hurt him and all we want to do is love on him and show him he is safe in our arms. The majority of the time he was in the NICU he was under a warmer and only had a diaper on. So he was not swaddled, dressed and I’m sure felt vulnerable. Now anytime we change his diaper or clothes, he kind of freaks out and likes to be wrapped up.
Having worked in a NICU, it wasn’t any of the medical stuff that got to me, I can handle all the tubes, wires, etc… even hooked to my child because I understand them and know what their purpose is. The thing that got to me the most was the fact that I couldn’t comfort Hayden when he needed it the most.
Seeing my child in this “bubble” crying and upset knowing I can’t do anything but touch his little hand to comfort him has to be one of the worst feelings I have ever felt before. Just typing this and thinking back makes me tear up (man those pregnancy/post pregnancy hormones are powerful).
Another aspect of having one child in the NICU and another in the regular newborn nursery is the guilt factor.
Knowing that one of your sons is getting so much attention and love that he is over stimulated and your other son isn’t even being held and in your hormonal mind thinking he feels like he isn’t loved. Needless to say it was very tough only getting to see Hayden a few hours a day while he was in the NICU.
I am so happy to have both my boys home and healthy and its crazy to see how much they have changed in a little over a week.
I love that my little Hayden went from this (sick and vulnerable) a week ago:
To this (safe, happy and secure with mom and dad):