My beautiful sister is the mommy of a beautiful baby girl! She was born 11/06/10 at 8:08 PM 8 lbs 7 oz. And 20 inches. I wish Samantha was here to celebrate, but it was a joyous day. Amber is the best mommy of course and Kinsley is a sweetie pie. Xandra and Hannah love the new baby. Cousins!
I saw these sleepers and it really expressed how I feel all day every day. This empty sleeper and the hole in my heart. I see the space where Samantha should be. I sold the stroller, returned her clothes, returned the second car seat and I'm working on getting rid of the crib. But that hole is still there aching like crazy. I started crying when I saw Haloween costumes. I'm not sure I can handle the holidays this year. I feel like our Christmas card should be something like this picture. Sweet baby Hannah and an emtpy space where my sweet baby Samantha should be. I still can't believe I have to live the rest of my life without her. I can hardly bear the pain. My girls help me with the joy they inspire. I just have to adjust to my new normal.
Samantha will be in surgery by 10 a.m. She is currently septic and they still can't seem to give us a prognosis or diagnosis. We will update again when we can.
This morning we got a call about 4 am that Samantha was very sick and being transferred back to St. Davids. She was perfectly fine at 11 pm and turned around within about 30 minutes. Her stomach is again distended, she is ashen, and having trouble breathing. The dr. at St. Davids said he is very concerned she has severe NEK or NAK which is apparently when bowel/intestinal tissue necrotizes. He said he is VERY concerned and that she is very sick girl. He said he thinks the surgeons will explore and see that its less severe than her symptoms indicate. In some severe NEK cases the major intestines necrotize globally all at once. There would be no recovery from this. If there is any religious, spiritual, or even superstitious belief you have, please please do it for Samantha. We will update when we can. Thank you for all your prayers and support, they has been invaluable.
Well we dared to ask the nurse last night and she told us best case scenario Hannah could come home before the weekend. Then this morning the doctor left me a message that she wanted to start the final tests to see if she is ready then she would come home Friday!!! Hopefully all the tests will go well and we will have our Hannah home in just a few days. I really couldn't believe it could happen so fast. She started taking all her feedings by mouth yesterday and she has been doing well!
Samantha is taking 4 feedings by mouth each day and is taking it well... so she could be just several days behind her sister.
We are so excited and busy with preparations... getting our baby stuff out of storage for example! She will want a bed to sleep in - and bottles for eating! :)
I am sooo ready for babyworld. Eat sleep poop. Repeat :) and alexandra is soo ready to hold her baby sister. She is very excited about helping us feed her too.
I can't wait. Will keep you up to date.
Where to start…
Both girls are doing great and both are out of their isolets. They're holding their temperatures well. As of this moment both girls are now back together in Round Rock so we are all very relieved. This should not only be much easier logistically but many people have told us that being near each other can be better for them both. It will certainly be better for us not having to go to St. David's twice a day to see her. Samantha's transfer is also great news because they wouldn't transfer her until her cystic fibrosis test came back negative along with some other tests. It also means they are reasonably medically certain (doctors…) that her intestinal problems are in the past.
They're both taking p.o. feedings (by mouth) multiple times per day and are doing well, they are both at full feedings which is 150 mL/kg/day. They are also both off caffeine which, coupled with a cessation of apnea episodes, is a requirement of going home. The other requirement, which is the bigger achievement, is that they must move from 2 – 3 p.o. feedings per day to all 8. The encouraging thing is that everyone we've talked to (nurses, nurse practitioners and doctors) have all said that this is not a gradual process. They said it is as if a light switch goes off in their cute little heads that once it goes off they just get it and p.o. feed from then on.
As Jaclyn has said we can start to see the light at the end of the tunnel. They've already talked to us about rooming in. Rooming in is when the parents spend a night or two in the hospital with the babies in the room sans the monitors. This helps parents make the transition to home where they cannot depend on monitors and nurses, but the nurses will be available while rooming in when needed. I originally thought that I would not need this because I already have had a baby and as you all know I am not by nature a panicky guy. Recently though the thought of having the two of them home without heart, oxygen saturation, and respiratory rate monitors has been daunting. I know they say they won't let them come home until they don't need monitors anymore but that really doesn't help. This will hopefully be a good transition step and is only done shortly before they are ready to go home.
The process is not over but I would like to thank everyone for all the support we've gotten over the last month or so. We could not have done it without you and we can't wait to see you all and have you meet the newest Johnsons. The hospital did a good job of pre-warning us and I wanted to pay that forward and let everyone know about what it will be like when the kids come home at first. As with all newborns they are vulnerable to disease and sickness and as preemies they are more so. They have told us that for the first month or two they won't be able to go to the mall or church (large gatherings of people) and that we must be very restrictive in how many visitors see them at first. Jaclyn and I would love to have a big party on the day they come home (probably won't be the same day) and have you all come but it will probably be a month or so before most of you get to meet them. I can tell you though that if you are on this list and receiving this email it is because it is important to me and Jaclyn for Samantha and Hannah to get to know you.
Thank you again so much for your support, Jaclyn and I both feel like a major obstacle was overcome today and I can't wait to send the next update. That may actually be tonight when I take pictures because other than ultrasounds there are no pictures of them together.
David, Jaclyn, Alexandra, Samantha, and Hannah
Hello All,
Yesterday was an amazing day news-wise.
Samantha took her first attempt at a bottle well by finishing the entire bottle! They moved her from 20 to 23 to 26 mL. When they get her to full feedings (roughly 40 - 45 mL) then the IV will come out and she'll move into a crib instead of her isolet. Also, today is a big day since she just hit 5 pounds (5 pounds 1 ounce). Possibly the most exciting news is that one of the St. David's network NICU directors spoke to the Director at the St. David's Samantha is at and got him to agree to transfer Samantha to Round Rock when she hits full feedings (Monday/Tuesday if not before). All we have to do is work it out insurance-wise and Samantha will be back to Round Rock and we can see both our littlest girls in one 30 second trip. The only drawback to her moving to Round Rock, though it is relatively small compared to the benefit, is that Round Rock does not allow anyone to visit but the parents and grandparents until April. At this rate though, I don't think that either girl will see the NICU in April.
Hannah, not to be outdone, took her full 40 mL in only 10 minutes. This is a very important step to her coming home (the full feeding by mouth, not the speed). She also may come off the caffeine tomorrow. This is important for coming home because the caffeine helps prevent apnea episodes, which she must be free from for 5 days before she can come home. She is still only one degree away from being in the crib. The isolet is set to 28 degrees Celsius. The nurses said that they take them out around 27 degrees because that is essentially air conditioning anyway.
Alexandra is holding up well. She can clearly sense that things are different but both Jaclyn and I try to set aside time each weekend to spend time with her alone and I try to give her bath each night to keep continuity with our life in College Station. Jaclyn also tries to carve out part of each day to spend time with Alexandra. Having Samantha moved to Round Rock would be a huge boon in this regard because the NICU trips would be cut in half but the babies would be seen more plus the hour car trip (round trip) would be cut to 1 minute (round trip). Her grandparents have been great at watching her and taking her on outings while her mom and dad are with the little ones and dad is working. Soon she will get to help us take care of the babies and teach her little sisters all the trouble they can get into.
More updates to follow this weekend!
David, Jaclyn, Alexandra, Samantha, and Hannah
Hello All,
This is the first full update in a while but as you can imagine everyone has been pretty busy.
Jaclyn is doing well. She is still trying to get back to full speed and has been fighting the occasional fever/aches and pains. Between the two of us and grandparents both our littlest ones are being seen at least twice per day.
Samantha is amazing. Now that the surgery is behind her and her digestive system appears to be doing exactly what it should, her feeds are increasing at an amazing rate, which she is tolerating well. Today alone she started at 14 mL then went to 18 mL and by midnight she will be at 20. I have found out that the formula for a "full feeding" is 150 mL/kg/day. At her current weight (4 pounds 11 ounces) her full feeding is roughly 40 mL every three hours. It will be a great step to get to that point and being able to take that all by mouth is one of three requirements to come home. She is also already on room temp inside of her isolet. Every feeding is going down her system and there is a negligible amount of residual in her stomach. The nurse said today that she would probably fine outside of her isolet right now but because she is on the IV she may stay in longer. The isolet is much better at handling IV cords than a crib. At this rate she will be on full feeds and off the IV within a few days. We're seeing what we can do about having Samantha moved back to Round Rock but with hospital procedures and such, we'll just have to wait and see. It could also turn out that by the time St. David's is willing to transfer her, she could just come home.
Hannah is doing well as always. Yesterday Hannah took her first full bottle of 37 mL. As with Samantha, this is a requirement for coming home. She's growing quickly and she's currently at 4 pounds as you may have heard. She is almost to room temperature so we're hoping she will be out of her isolet before too long as well. Hannah is free of her IV now that she is on full feedings and tolerating them well. It is actually difficult to update on Hannah because she is doing well and the only regular change is the amount she is feeding.
Thanks for all your support and prayers,
The Johnson
David, Jaclyn, Alexandra, Samantha, and Hannah
I know I owe some better updates... there have been small progessions with both babies. Less heat in the incubator, no breathing problems, hannah having more in her feedings everyday, practicing breastfeeding and putting on weight. But today samantha will have her first feeding since the surgery a week ago. She will have 2cc's of breastmilk at 2:30 today and every 3 hours if all looks well (not too much left in her belly before her next feeding). They will put the feeding tube in her mouth for now. I am doing kangaroo care with her everyday now. She loves to snuggle- well I know I do.
Alexandra and I went to the library yesterday which was sooo nnice and we went to jungle java this morning but she wantesd to go home after a half hour... I think it was too much for today. I am planning to try nap time, but its so hard to get her to rest except in the car. I'm hoping some mommy time will help us both. I miss spending all day with her.
I am resting more but still busy. Hannah, alexandra, lunch, samantha. Hannah, dinner, alexandra's bedtime... my bedtime. And I need to pump 8 times a day! But I can't imagine seeing my babies any less.
We are so grateful that Samantha does not have hirschsprung's disease. Thank you so much for all your prayers. We will now hope that she will be able to digest food and stool late this week. They will give her 5mL of milk and see how she does. Thank God she is ok. She looks great and is "fiesty" which is a good thing.
I think I have been pushing myself a little too hard because I have a low grade fever and feel miserable so I am trying to take it easy tonight. Hopefully I will feel better tommorow. But for now I'm just sooo happy about the test results.
She is no longer on the ventilator!!! She doesn't even need the nasal cannula. She has only one IV and she isn't on pain meds. She was sleeping soundly when we arrived and I got to hold her. She slept so sweetly. The nurses called her the little ballerina because she likes to point her toes. :)
Hannah is also progressing well. She is gaining weight ( she is at 3 lbs 7 oz and her incubator temp was lowered another degree. She has also been approved for two breastfeeding a day. She is still getting milk through her feeding tube but she took really well to latching on sucked well :) we tried it for the first time yesterday and she was a superstar.
We are getting used to our hospital schedule and will probably try to take it easy this evening.
Today was hard because samantha is so far and is still on a ventilator. But it was great because I got to breastfeed hannah a little and take my Alexandra to old mcdonalds. I took a nap from 7-8:30 and I am going back to bed. Thanks for your continued prayers and support.
We saw her and she looks great. I held her hand and she will be better soon. She is and will be sedated for a while to keep her comfortable but they said we could hold her tonight.
So hannah is doing really well and has no problems she is at RRMC still. Samantha has had distended bowells almost since birth. They she didn't poop even when they gave her a suppository. They are concerned she may perforate so she may need surgery which is why they transfered her. If she gets better they can transfer her back to be with her sister. We just talked to the nurse and she is stable now but they are going to run some tests to see if something could be blocking. The good thing is they checked her lungs and heart look great.
Alexandra had a great morning with grandma and is napping in the car. I am on my way to see samantha at the hopsital.
We are still hopefull everything will just work itself out.
I haven't sat down to update lately. But please say a prayer for samantha. They are transfering her to a level III nicu just in case she needs surgery. She may not need it at all. Hannah is doing well.
More info later.
Jaclyn
Please fwd to anyone who will pray we won't need surgury.
I was only up to have my vitals checked and go to the bathroom. I am feeling sooo much better after getting 7 hrs of sleep. Plus the last time I called the nursury around midnight they said I could hold the babies!!! I asked David to come back by 8 so we could go hold them for the first time together during one of their scheduled wakings. The nurse said they are great just need lots of rest so they can grow and get stronger. I wish they could just bring them to my room :( yesterday after I got off the morphine my morale took a turn for the worse as the reality of my babyless recovery set in, so I was really ready for some good news.
Well I'm going back to sleep now. Walking is getting much easier and I don't feel sick anymore. So hopefully soon I will have an arm full of baby! Samantha and Hannah I miss you and I'll be there soon!
I took alexandra to carmax with me and she fell asleep in the car. We are at that point where she still needs naps but refuses to take them. She let me carrry her in - sorry but what can I do? I needed to get my car appraised!- so we are waiting and cuddling. She is so sweet. I was remembering when she was a baby how I used to hold her while she slept all the time. And this may be my last opportunity because soon the babies will be taking a lot of my holding time. I hope we can always make time to cuddle with alexandra though. She will always be our first angel.
