Home!

Nov 8, Day 24
Carissa is Home! We are so thankful God has made her well so quickly. Her hospital stay has been much shorter and easier then we were told to expect. We are convinced that this is due to the many prayers offered up for her and the care of her heavenly Father. Thank you everyone for your prayers and your help as she went through this part of her journey. Please pray with us that she continues to do well, without any more hospital stays.
Praise God from whom all blessings flow!

November 7

She passed the Car-seat test. Her evening weight on November 6 was 5lbs 9.5 oz, (up 16 grams from the previous day) not a big enough gain to make the Doctors happy. She had ha a period of being off the IV's and not at full feeds, so they were not surprised. Her evening weight November 7 was 5lbs, 12.5 oz, up 72 grams from the day before.

Nov 6

We switched Carissa to nursing full time, without me pumping first. She did well through the night without IV's. I am allowed to nurse her every 3 hours. They don't want it to be more then that because she was not supposed to be at full feeds till this afternoon. The doctors say if she does well we will switch to nursing on demand tommorow. We were also told to bring in a carseat so she can do a carseat test. She needs to be buckled in it for 1.5 hours without her blood oxygen levels dropping, the nurses think she will do great. If all goes well they are discussing possible discharge FRIDAY! she needs to pass the test, be nursing successfully, and gain weight (not loose it). Please pray this works!

Nov 5

I received special permission for mom to hold carissa when I was gone, so I spent the afternoon of nov 4 till afternoon of november 5 at home, and Oma got her cuddles in. When I got back they told me I could start non-nutritive breastfeeding! I pumped, and then nursed Carissa. She did amazing! They weighed her before and after, so we knew she drank 28 mls, they gave her the other 10mls in a bottle. I was allowed to do this once a shift. Just before the 7:00 shift change the nurse noticed a red streak from her IV live, so they took it out. they decided to leave it out since she is what they call a "hard poke" (each IV or PICC has taken 5-6 attempts) and she is close enough to full feeds to be OK without it.

October 19-Nov 4

Quick updates to catch us up....
 Oct 19
 The Doctors removed Carissa from the ventilator and she is breathing on her own, Adina and Dennis got to hold her for the first time.  
oct 20
Carissa pooped for the first time, this is exciting because it means that there are no obstructions in her bowels or kinks. That means no more surgery, unless they develop later. She is so far ahead of where we even dared to hope for. A true miracle and blessing.

Oct 21

the turned off the suction on her nose tube and switched it to a straight drain

Oct 22

They clamped the tube draining her stomach, and she tolerated it without many spits. 

oct 23

Carissa got her first feeds. She received 3 mls of milk every three hours. They removed the stomach draining tube and replaced it with a feeding tube. It was the first time I had seen her face without tubes, and they gave me a few moments to take a picture. She constanlty surprises us by how well she is doing. . She is getting all her nutrion via intravenous for now while her bowels are healing.
We praise and thank God for such an incredible blessing and miracle,
and we love her to bits.

Oct 24

The doctors decided to try increasing her feeds quickly, and increased by 3 mls every 3 hours, she got up to 15mls by 9:00 pm, then had to cut back to 6mls because she was spitting green too much, this means the food wasn't going through.   She is well enough to move into a crib, this was a great step because it means we are allowed to hold her whenever we want now, family is also allowed to hold her when they visit. 

Oct 25

they decreased feeds to 3mls since she was still spitting

Oct 26

Carissa got her first "bottle" feeds. since she is still at 3ml every 3 hours they didn't put the bottle on, but just put the milk into the nipple. She loves it! the first time she just played with it, till a drop came out, then she started drinking fast. A feed takes less the 30 seconds, then we need to hold her without moving too much for about 20 min so she doesn't spit. She pulled her feeding tube out and since we weren't using it we enjoyed seeing her without tubes all day

Oct 27Since Carissa had too many spit ups and is not pooping on her own they stopped all feeds  she is not impressed she loves her milk and enjoyed every drop they gave her. They checked with -rays to see if there are any obstructions or kinks in her bowels but they can't find any so they figure they just need to slow down and give her more time. Had it worked she would have been able to go home very quickly, but that was not happening. A bit of a setback but she's been running since the moment she was born, a step back now and then is to be expected.  Oct 28they put Carissa back on the suction drainage nose tube since she was still spitting.Oct 29 today the amount they were draining has slowed down (and changed from dark green to light green/clearish) so they could turn off the suction and just drain her every diaper change with the syringe. She is still off her feeds, and will be at least till the drainage tube comes out. She hates it, and spent the night crying, and only calms down when I hold her.
Oct 30
they clamped Carissa's stomach drain tube, and she didn't spit at all.
She passed her birth-weight(4lbs 12.5 oz) and is at 4 lbs 14.5 oz
Oct 31

Carissa was able to begin feeds again! Her stomach fluids had cleared and she stopped spitting up so doctors oked it. She is receiving 3mls by mouth every three hours and the will slowly increase this as time goes on. The important word here is slowly. They tried aggressively and it back fired so now they will proceed more slowly. Her nose tube has been removed and she looks much more comfortable.

All in all much reason for thankfulness

Nov 1

Carissa is up to 6 ml every three hours-so far its going well. If she keeps doing well with no spits they are hoping to increase each feed by 3 ml every 12 hours starting tomorrow at 9 am. 
She passed her birth-weight on wed at 4 lbs 14.5 oz, today she is 5 lbs 4 oz

Nov 2

feeds of 9mls and 12 mls, some white milky bubbles with burps, but no green spit.

Nov 3 

feeds of 15 mls and 18 mls, weight is 5lbs 7 oz

Nov 4 

They have been having a hard time with her PICC lines and IV's. her veins are very spidery, and every time they try to replace them they try about 6 times before being successful. they also fail regularly and she doesn't have many more places they can try. Because they don't have many more more options they want to try increasing her feeds faster to get her to full feeds (aprox 45 mls for her weight) before the IV they put in today falls out. They decided to increase by 3 mls every 6 hours. Her feeds today were at 21mls, 24 mls and 27 mls. 

Oct 17 and 18

Thursday Oct 17-
Carissa was on a high dose of Fentanol, and was barely moving. She was intubated and not taking any breaths on her own because the meds that numbed her pain and relazed her muscles also suppressed her breathing. We had to be carefull with touching her, a rub would make her arch her back in pain, she could only tolerate the ocassional firm still touch.

Friday Oct 18.
The Drs started decreasing her Fentanol, and Carissa started trying to breath over her tube ocassionaly, but it did most of her breathing for her. She was more awake, but also more agitated. I was able to help with her care, doing a diaper change, mouth care and taking her temperature. We were able to give her her first kiss that evening.

Oct 16- Carissa is born!

They started induction at 8 am, but progress was slow because we were still early. By around 6:30pm they decided to break my water. Carissa had been head down at every ultrasound since 20 weeks, but as soon as they broke my water she decided to flip to breach. They tried manually flipping her, then brought us to the OR for a C-section. Carissa Danielle Holwerda was born at 6:56 pm, weighing 4 lbs 12.5 oz. (she was 5th percentile for weight) I was so happy to hear her cry as she was born, and until she left the room. I did not get to hold her, and only saw her across the room, but Dennis was able to cut her cord. Thankfully she inherited Dennis's long back, and had less intestine out then the Drs had expected. She went immedatly for surgery and had primary closure within an hour of birth.  after a few hours I was able to see her in the NICU, but could only stay a few minutes, with no touching. We are so thankful to our heavenly Father for how well everything went, He held Carissa in his loving hands and protected her. Primary closure is possible in less then 10% of gastro babies, and we were told at 22 weeks already that it looked like too much intestine was out for it to be an option. Prayers are powerfull!

35 weeks- Oct 8, 36 weeks- Oct 15

Had another ultrasound Oct 8.  The amniotic fluid levals were good, she scored perfect on her movement/breathing tests. They estimated her weight to be 5lbs 4 oz (this measurement was way off)

Oct 15 was my next ultrasound, this time they noticed a large unexplained drop in the amniotic fluid levals. they did not dare wait long before  delivery because Gastro babies have a higher risk of stillbirth. They did a non-stress test, and decided it would be safe to wait till the next day for delivery, but no longer. I was booked in for 8 am  Oct 16

Sept 24- 33 weeks

I had another ultrasound/Mac visit and things are looking good! There is not much to report since there are few changes. They estimate Baby's weight to be 4lbs 2 oz now. Baby  also scored perfect on all the tests.

Sept 10, 31 weeks

Our prayers are being answered! I had my Mac visit yesterday and things are looking great. Baby jumped from the 30th to the 50th percentile, they estimate weight to be 3lbs 10.5oz. There are also no signs of swelling or intestinal damage yet. Amniotic fluid levels, blood flow and Baby's movements were also great. We are so thankful for the care our Heavenly Father has shown to protect our precious child so far, and praying for continued good news.

Aug 27 ultrasound and Mac Visit

August 27- 29 weeks
I had another Ultrasound and OB clinic visit today, and then met one of the Neonatologists. At the Clinic they said things are still looking great. Thankfully there is no sign of damage or swelling in the intestines. The Baby's growth is following its percentile curve and looks good. (about 30th percentile meaning Baby is bigger then 30% of babies for gestational age) They estimate Baby's weight to be 2 lbs 4oz. today. These are all blessings, things could be looking much worse at this stage. They also told me they see about 10-14 cases of gastroschisis at McMaster each year.
The Neonatologist is the Dr who will provide day-to-day care in the NICU. They work as a team, so we will see one for two weeks, then a new one for two weeks ect. (Next week I will meet with a  pediatric surgeon; Baby will have one primary surgeon from birth through the entire hospital stay, and for follow up care after we go home.)
The Neonatologist explained the normal care for Gastro babies at Mac.  He said when Baby is born he will wrap the intestines in gauze or plastic and insert a small sugar-water IV. After this I will be able to hold Baby for a few min before they go to the NICU unless there are urgent concerns. In the NICU the surgeon will examine the bowel and if it looks to be in good condition put it into a silo. (usually it is in the silo within 4 hours of birth)  They will put in an IV line that leads to a major vein and start TPN within 24-48 hours, baby will also be on antibiotics until closure surgery at least. He said the bowels will slowly be pushed inside the abdomen from the silo over approximately 2-7 days (usually). Over the next 1-2 weeks they watch to see if the bowels are working. They are looking for no more bile coming out of the mouth/tube, listening for bowel sounds, and waiting for baby to poop. When they are sure the bowels are working and there are no blockages they can start tube feeding. they give 1-2 ml at a time to start, and if baby tolerates well they will slowly increase feeds and decrease TPN (usually this happens during weeks 4-6) When Baby is nearing full feeds they will allow nursing. After Baby is able to nurse or drink from a bottle and is growing We will be ready to go home. (Usually around 6-8 weeks)
He has seen this process go very quickly before, and sent babies home after 3 weeks, but says that is rare. If there are complications at any stage things will take longer. Some of the complications he mentioned include infections, a bowel obstruction or kink, or "Short Gut"  These issues happen in about 10% of Gastro cases, and can be very serious. Short Gut comes in  two varieties; functional short gut and physical short gut. In the case of functional short gut the entire intestine is there, but it is not absorbing nutrients well. this is from damage in the amniotic fluid and can often be predicted by ultrasound.  In physical short gut the bowel is actually short because pieces of it died or were so badly damaged they had to be removed surgically at some point. Both Short Gut syndromes act the same way, leading to malabsorption, poor growth, special medications, longer hospital stays, and long-term TPN use leading to liver dsyfunction/failure.
Please pray that things continue to go well.
We are thankful to have made it to 29 weeks with no sign of labor, please pray that continues- It would be Ideal for Baby to be born at 37 weeks.
We are also thankful for good growth with no signs of damage, please pray this also continues.
Please also pray that everything goes well after Baby's birth, that we do not experience infection, bowel obstructions or either form of Short Gut. Please pray for strength for the rest of our family; it will be a stressful and very busy time for us.

Psalm 33: 20-22
We wait in hope for the Lord;
    he is our help and our shield.
21 In him our hearts rejoice,
    for we trust in his holy name.
22 May your unfailing love be with us, Lord,
    even as we put our hope in you.

Aug 6- Ultrasound and Mac Visit

I had an Ultrasound Aug 6 and everything looks good. So far there is no damage to the intestines showing, although it sounds like they don't expect damage yet. Baby is growing well and measuring where he/she should be for dates (I was 26 weeks) They estimate weight to be around 1 lb, 9 oz right now. According to the ultrasound there is no signs of labor yet.
We met the Dr who will be following the pregnancy. She says they will probably induce between 36-37 weeks because the lungs are developed by then, but they want to prevent as much of the late pregnancy damage as possible. This means our baby will be born mid to late October, if Baby doesn't decide to come sooner on its own.
Many of you have asked how I'm doing, and really for now I'm OK. I had a hard time when we first got the diagnosis, but we have come to accept it (Dennis much quicker then I did). I know that this is the Lords will, and He has a plan for good in this as well. This child is His first, and He loves Baby even more then I do. Everything is in his Fatherly hand,  He Cares, for this baby, and for our family. There is nothing I can do for Baby right now, so I am enjoying the summer with my family.  Our wedding text has been bringing comfort these last few weeks, It was Psalm 121, with the focus then on the last verse, which the minister (uncle Matt) described as a summery of the entire psalm:

Psalm 121

A song of ascents.

1 I lift up my eyes to the mountains –
    where does my help come from?
2 My help comes from the Lord,
    the Maker of heaven and earth.

3 He will not let your foot slip –
    he who watches over you will not slumber;
4 indeed, he who watches over Israel
    will neither slumber nor sleep.

5 The Lord watches over you –
    the Lord is your shade at your right hand;
6 the sun will not harm you by day,
    nor the moon by night.

7 The Lord will keep you from all harm –
    he will watch over your life;
8 the Lord will watch over your coming and going
    both now and for evermore.

Our Journey Begins

June 25, 20 weeks exactly -I went for my routine 20 week ultrasound. I was excited, looking forward to seeing my little baby again.  Things were going well until the tech got a shocked look on her face, then got quiet. I knew something was wrong. she left, saying she needed to check f she had all the shots needed, then came back 20 min later with a doctor. as soon as I saw him I asked what was wrong, I've never had a doctor in  the ultrasound room before.  he explained that our baby had a hole in its abdominal wall, with intestine on the outside. It looked like Gastroschisis, he said, but he wasn't ready to rule out Omphalocele.

July 9, I'm 22 weeks- We went to Macmaster Children's hospital for our detailed ultrasound and to meet a doctor there. They officially diagnosed baby with Gastroschisis. Approximately half of the small intestine is out, and possibly some of the large as well. (apparently its hard to tell the two apart from each other outside of the baby's body) The good news was that all the other organs are in the right places right now. This can change later in the pregnancy, but he said it usually stays about the same. The intestines are often damaged or swell, and parts could even die as the quality of the amniotic fluid deteriorates later in pregnancy. They will be watching for damage to the intestine with regular Mac ultrasounds, but will try to have me deliver as close to term as possible. If Baby comes early there will be prematurity symptoms to deal with as well. Many Gastro babies spontaneously come early, but they will try to prevent that.
When Baby is born if the intestines are undamaged they will put a silo (looks sort of like plastic wrap) around them and slowly over days or weeks push them back through the opening into the abdominal cavity, before closing the opening with surgery. They need to do this very slowly because the intestines have never been inside, so there is not enough room for them. If they pushed them all in at one time the lungs would be under too much pressure, and could fail. If the Intestines are damaged at birth they will need to cut out the dead parts, and try stitch what is left together before they can try put them inside.
After surgery we will need to wait and see if the intestines are working before Baby will be able to eat. They will start feeds very slowly gradually increasing them if Baby does well, but stopping or slowing them if Baby does not do well.
Best case scenario we will be able to bring Baby home after about a month in the hospital. However if there is damage or complications after Baby is born it could be much longer.  The Doctor told us that about 90% of babies born with gastroschisis go home without further issues. I will be going to the high risk pregnancy clinic at Mac for the rest of my pregnancy, and Baby will need to be born there, and will go straight into the NICU after birth. At this point there is nothing medically I can to to change the outcome for Baby.
We have been blessed with many calls, email, and offers of support and help, I truly am grateful. Later in the pregnancy, and especially after Baby is born we will need the help everyone has offered, for now we need your prayers.
Please pray for Baby to be born as close to term as possible. Although many Gastro babies come early, the future outcome is much better when Baby is born at or close to term.
Please pray that there is little or no damage to the intestines
Please pray that baby does not experience  infections, bowel obstructions, or other complications after birth.
Please pray for our other children, they will have a hard time when life is turned upside down after Baby is born.
Please Pray for Dennis and I, that we have the strength needed, and that we do not dwell on the possible negative outcomes, but focus on the positives

The passage that has been running through my head for the past few weeks is one that is part of what has always been my favorite text "6 Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. 7 And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." Philipians 4:6-7
and this one jumped out at me today
"Ah, Sovereign Lord, you have made the heavens and the earth by your great power and outstretched arm. Nothing is too hard for you. Jeremiah 32:17 NIVUK"

The Lord is in control of everything, and he will work everything for good, we can trust in this. I don't know why he would chose for Baby to be born with Gastroschisis, but we can trust that he has a plan in this too.