Life in the NICU

3 weeks ago today, Ben and I were whisked into the world of parenthood – as well as the world of being a NICU parent. Every NICU parent we’ve spoken to has equated it to being on a rollercoaster – and so far, we would agree.

Jackson has been at the Iowa City NICU now for just about 2 weeks – and we’d say it’s been a good 2 weeks. We’ve learned a lot about what is going on inside Jacksons body since we’ve been here. Here are some highlights of what he has going on:
1 – Prematurity – obviously, he’s a preemie, but it’s something that he has to overcome – he has to continue to grow and get stronger. That takes a lot of strength and energy for a person his size. The doctors and nurses seem to think he’s doing a pretty good job. He’s doing very well and the nurses call him a “self corrector” meaning when his numbers (heart rate, blood oxygen, ect) begin to dip, he can bring them back up. He needs help occasionally, but so far, he’s done remarkably well.
2 – Lungs – He is still on the standard vent, and is on somewhat low settings. They will continue to watch all his numbers, and as he is ready, will begin to wean him off of this vent. As the doctors have said – “his lungs are not his issue”
3 – Brain bleed – he ended up not having a scan on Monday to evaluate the bleed. The last scan was done on December 19th – and it showed no change. The next scan is scheduled for January 2nd. If this scan shows no growth, the next scan will take place around 36 weeks gestational age.
4 – Kidney function – every day we are watching the fluid output through his catheter and penrose drain. We don’t want too much, or too little. Since we’ve gotten to Iowa city, the total output has been high – which is what has lead the nephrologists to believe there is damage to part of his kidneys. Over the past few days, that total output has started to decrease. This is a good sign, and we hope that the numbers continue to go in our favor. We are hopeful, but are trying to keep ourselves in check; as we have learned, life in the NICU can change quickly.
5 – Bladder -As I said above, we watch the fluid output on both the catheter and penrose. As of Tuesday sometime, the amount of fluid coming out through his drain has decreased to almost zero! This is wonderful news, as we’re hoping that this means the “hole” in his bladder/ureter is healing!

Most of these are a "wait and see" things. We have a long way to go – but right now, we feel like we’re doing well.

We’ve been given some great advice, from some wonderful people; we’ve been blessed by family, friends and strangers – and we’ve been given the best gift of all, our son – both Ben and I are falling in love with him more and more every day.
It’s funny to see full term babies, all chubby and cute – and did I mention HUGE!
We’re just amazed when we look at Jackson, all his features – perfectly formed just like those term babies (just a lot smaller). His ears, toes, fingers, and nose (ha, that rhymed) but what really blows our mind is how strong he is – everyday we are blown away by our little man. God is good =)

Just for fun - we've been noticing that Jackson likes to suck on his tubes, or if we clean out his mouth the swab that we use. He got an IV line out of his hand tonight and his hand went right to his mouth.

Christmas with Grandma & Grandpa Helland

Merry Christmas

Well we had one heck of a christmas present... Yepp, we got to hold Jackson for the first time on Christmas night!!!!!  That was an amazing experience :-)  On Christmas eve, Jackson had the UA line going through his belly button removed which was the last thing keeping us from holding him.

Jackson has continued to be fairly stable throughout the last couple of days.  We have learned some more about what may be going on with his kidneys as well as what that could possibly mean for the future.  Basically, there are two parts to his kidneys and the doctors are concerned that he may have damaged one part (but not the other part) and that can sometimes cause kidney problems later on in life.  However, they don't know what will happen for sure or to what extent they might be damaged.  So all we know right now is that his kidneys are working at filtering his blood and keeping his body clean.

His lungs continue to be strong; the doctors are planning on placing him on the standard style of ventilator again today.  They don't like going back and forth but they have to have the jet vent on such low settings that they want to go back to the standard vent style.

His head scan last week showed that the bleed in his head was not growing in size.  He has another scan today and if that comes back the same (or maybe even smaller :-)) that would be a great sign that the bleeding has stopped and that Jackson's body may have started the process of re-absorbing the blood.

Jackson has continued to be feed little by little.  They give him about 2cc of milk every 8hrs and this seems to be working well.  If they give him much more than that, a little is still in his stomach when the next feeding comes around.  But he is making dirty diapers so we know his digestive system is working, it is just taking a little while to build up efficiency.

Our little Helland family considers this past week to have been a very good week.  Jackson seems to be getting more and more stable every day.  We are very grateful that God has given Jackson stable enough days that Annie and I were able to make it to Pella for Christmas with her family. 

Please continue to pray that stable days continue, that feedings continue to go well and that he is able to eat more so that he has the energy to grow.   Thank you also for your continued prayers for the continued healing of his urinary system rupture as well as for his head bleed.  Annie and I have been very blessed by so many of you all and that makes it easier for us to keep taking life one day at a time, thank you.

Two Week Birthday...

As of 11:28 Wednesday night our little man is 2 weeks old!! We’re so proud of him; he’s a strong little guy!  He’s been through more than we can imagine.  But he’s doing well and day-by-day he is showing us how strong he is.  He is currently 1 lb 15 oz (this changes daily – he goes up and down a lot) and pretty sure he’s the same length.  The nurse said the extra weight that he has gained the last couple of days is from fluid and is not actually weight so we shouldn’t get too excited about him gaining weight just yet.

He is still doing well on his vent, and is still on low settings – the doctor came in yesterday and said that she preferred to keep him on this vent until it is too much for him.  At that time, they will switch him to a different style of vent. 

Last night Jackson had another good night (praise the LORD).  They started feeding him 2cc every 8hrs again starting at noon (they had stopped feedings on Wednesday because of a concern, but it ended up being a non-issue).  Other than that and a few fluid changes, that is about all that has changed in Jackson’s life today.  Jackson continues to urinate from both the catheter as well as the Penrose (sp?) drain in his abdomen.  Jackson’s Creatinine (sp?) and BUN levels are both down to where they should be which makes everyone very happy and hopefully optimistic that his kidneys are working properly with very minimal (if any) long term damage.  Also, with his fluid levels going down, his puffiness has also started to decreased a little.

For a little demonstration of how little our little guy is, here is a picture next to a toy giraffe he has.  Without knowing the size of the giraffe, this is a poor comparison; but regardless, we took the picture and wanted to post it.  Enjoy...

 

Good Days...

On Monday Jackson had 2 scans to evaluate his head bleed, as well as his heart.  We know that he has had a bleed – this scan is used to see if the bleed has continued, or stopped.  The scan for his heart is to check his PDA – something all preemies have done. 

The head ultrasound was able to show that his head bleed was at least not getting worse.  This is very good news!!!  He gave us some information about what to maybe expect in the future.  If after a few more weeks of scans, they show little change, they will wait until 36 weeks (gestational age) to scan again – if there is change, they will continue to monitor him with head ultrasounds.  The doctor also gave us an idea of what we may be facing in the future.  He said Jackson could have very minor to major disabilities. Minor being a small motor skill that he could grow out of or receive therapy for – and the other end of the spectrum is sever disabilities such as Cerebral palsy.   As Jackson gets older, we will be meeting with doctors to evaluate where he is developmentally, and see where he will fall within that spectrum. 

Also, his heart eco came back that his PDA is not open (which is good).  The PDA opening allows for blood to bypass the lungs when he is in the womb.  When full-term babies are born this opening closes to get proper blood circulation within the lungs; it is fairly common that this opening doesn’t close all the way in preemies.  However; as of right now, Jackson’s is completely closed; thus reducing the risk of him needing surgery to close it.  This is also very good news!!!

At 8pm Monday night, Jackson also started to receive milk that Annie had frozen.  The doctors are starting him on very small amounts (2cc every 8 hrs) just to get his digestive system working but nonetheless, this is an important first step in getting Jackson eating steak and eggs.  =)  On Tuesday they determined that he handled the feed very well, and that they will increase his feeding to 3cc every 6 hours.  The doctors will be re-evaluating his feeding schedule today (Wednesday) on rounds.

Tuesday was also a good day for the ventilator.  Most of his settings were decreased and the nurses said that if he continues to have decreased settings, they may be able to switch him back to the other ventilator style after a few days.

Jackson continues to pee; some times it is a lot (relatively) and other times it is very little.  We never thought that having our son pee would make us so incredibly happy!  There is still fluid coming through his drain, but that is to be expected.  As the “hole” in his ureter begins to fix itself, we will be able to take the drain out.  

As you can see in the pictures below, Jackson is a little puffier that in other pictures.  This is because they have him on a high level of fluid intake.  This extra fluid is just filling out his little body a little.  They did this to make sure that he was not dehydrated at all; now that they know he is not, they have begun to lower his intake levels a little so that this puffiness will go away.

Please continue to pray that Jackson has more "good days" at Iowa City.  These days help Jackson become more stable now and once he is on a full feeding schedule they should help him to grow and develop more quickly.  Thank you for all of your continued support and for your prayers; the entire Helland/Terlouw family is very grateful.

 

Also - Arvin continues to do well and he was released from the hospital yesterday.

Here is what has happened in Iowa City so far:

Jackson was able to stay on a standard ventilator on fairly reduced settings until Sunday evening.  He began to have a few “spells” that made his blood gas numbers go in the wrong direction.  They have since given him another dose of surfactant to help his lungs properly “flex” (Surfactant is a substance that babies begin producing around 30 weeks) they also put him on the “jet” ventilator – this is much like the high frequency vent that he was on at Mercy.  The Doctor called this their  “growth vent” that they typically put micro-preemie babies on to help them grow.   After putting him on this vent, they slowly lowered the settings to where Jackson liked them, as well as getting the blood gas numbers where the doctors wanted them.  Both of us are a little disappointed that he was not able to stay on the standard vent, but we know what they are doing is for his benefit.

Sunday Jackson had a test to see where there might be a leak in his urinary system and an ultrasound to see if there was any further detail they could get.  Basically we found out that the junction between his bladder and ureter (tube that connects kidney to bladder) has ruptured, and urine is leaking from this rupture into his abdominal cavity (and out through the drain that was placed there Wednesday).  The ultrasound was unable to determine much, as Jackson is still too small for really precise imaging.  Either way, the doctors have the opinion that it is something that Jackson’s body will heal by itself for the time being.   They also told us that this particular issue is a relatively common one for little boys.  They said it is not entirely uncommon for this to happen within the womb and for it to begin to heal on its own before he would ever be born.  They also mentioned that this is not something that was caused by him being born early, but that this would have probably happened if he were still in the womb.  The doctor mentioned that being early may have been a blessing in disguise (for this issue)  as it could have resulted in a much worse outcome if he was still in the womb.  They are still watching his kidney’s, but his creatinine levels have gotten very close to the level they want it to be.  We are feeling confident that the kidney’s are functioning, but want to watch them to be sure they are functioning to their full capacity.

We are both happy to be in Iowa City as the Doctors & Specialists that we’ve talked to really seem to know their stuff.  We are feeling confident that things are headed in the right direction.  We do miss Jackson’s nurses at Mercy, and are looking forward to bringing Jackson to visit someday. 

On a fun note – Jackson has really been opening up his eyes lately.  It’s so crazy to see him look around and look at both of us. 

We feel like God is answering a lot of prayers for us – We are so thankful to all the people praying for us.  We hear about all the people who we don’t even know – from places so far away that are praying for us, and who are following our story.

To Pee or Not to Pee

When we arrived to the hospital on Friday morning, we knew that Jackson had not peed for awhile.  This is obviously concerning and since the doctors didn't know what was causing the fluid in his abdomen, they called in a specialist ( a nephrologist / kidney doctor) to look at his kidneys and see if there was anything they could do.  Basically, the nephrologist told us that modern medicine wasn't advanced enough to really understand what was happening with his kidneys and that there wasn't much known that would help him urinate.  Later that night, the night doctor came in and said he wanted to try something that sometimes works.  He gave Jackson some medicine and told us that he didn't know why, but sometimes this medicine was able to jump start kidneys that had stopped working in older children.

Well, it worked; kind of.  Jackson peed and has continued to pee in small amounts!!!!  This is very good news as he went over 30 hours without peeing.  The substances in his blood that the kidneys filter out have always been high but they got really high during those 30hrs.  Now, his levels have lowered a little since urinating.  The doctors now think that the fluid build up in his gut is actually urine coming from his kidneys.  Mercy felt that the team of specialists in Iowa city, would be the best team to help us figure out what is happening.  So, we were transported to Iowa city where they are currently studying and trying to learn more about kidney issues in micro-preemie babies.  The doctors and nurses  in Des Moines have told us repeatedly that Iowa City might not now exactly what is going on but they have the best shot at figuring it out and being able to do something about it.

We made it to Iowa City around 5:30pm last night and Jackson made the trip in remarkable form.  All of his vitals and electrolyte levels are looking better.  Today Jackson will  receive two tests to help determine if and where a blockage in his urinary tract is located that could be causing high enough urinary pressure to cause a rupture which would have caused his urine to spill into his body cavity instead of out of his body as it should.  Since Jackson's white blood cell counts have also started coming down, the doctors in Iowa City are in no hurry to remove the drain from his abdominal cavity since it is allowing a path for his urine to leave the body.  At this point we are almost positive the fluid in his body cavity is urine and not some other substance.  Furthermore, they are possibly going to want to leave the drain in his abdomen open for a while.  If there is a blockage in his urinary tract, once he is a little bigger they can try and go in and remove it; or if there is a rupture, it may just heal itself over time if we can keep his urinary back-pressure to a minimum.  So either way, the drain won't hurt anything as long as it doesn't get infected.

Please pray for guidance and discernment for the doctors and technicians as they run Jackson through a few tests to help determine the cause of the problem and as they determine how to best resolve the issue.  Please pray that Jackson's kidneys were not permanently damaged through the process also.  Please also pray for Annie and me as this now means we will be either apart from each other or apart from Jackson for greater amounts of time since Iowa City is further from Pella.  However, it also means Jackson has the best medical shot at getting better.  Thank you for your continued prayers for God's will to be done and for our little man to be healthy.
 

The ups and the downs....

The ups...
So Wednesday we had a good day.  Jackson's electrolyte and blood gas numbers started going in the right direction.  He had a blood transfusion (which was fully expected for him - it was never a question of if, but when)  and an adjustment on his ventilator settings (which happens every few days) and pic line was placed (main line that is used to give medication) but otherwise his day was quite stable. We left for home feeling hopeful of a new "normal" day

Then the down...
Thursday morning we received a phone call to get to DSM quickly.  Once we got there we found a pediatric surgeon examining Jackson.  Jackson had always had some fluid in his gut cavity but it had started to grow.  The only option we had was to put a drainage tube into his abdominal cavity and drain the fluid out.  Before this happened, the surgeon explained to us that he was expecting to see intestinal fluid come out of the tube which would quite possibly mean that some or a large portion of his intestine was dead and non-functional.  If this was the case, the doctor said little Jackson would not probably make it very much longer.

Then the up...
The fluid that came out was not intestinal fluid but a clear "water-ish" fluid.  The surgeon is not sure where it came from but it does mean that the intestines are not necessarily damaged!  Jackson will have more abdominal scans to see if they can find the source of the fluid as well as check the intestines for damage or deterioration; but either way it is a great sign that it was not intestinal fluid!  Fluid is still draining, so we are hoping to find out soon where this is coming from and why is it happening

Another up!
Thursday night, both Ben and I were able to "hold" Jackson for the first time - The nurse had to weigh him as well as change the bedding - both times, we were able to lift him up off his bed for a few seconds.  It was a great feeling to be able to handle him a little more - even though it was very short and there was no cuddling or anything like I am anxious for.

All of this has happened by 2pm Thursday.  We ended the day with numbers continuing to go in the right direction.

Looking forward --  they are watching his abdomen for more fluid build up & working on what that fluid is and where it is coming from.  Jackson's kidney's are not functioning to optimum capacity and so they have a specialist from Blank's Children's Hospital coming in for a consult sometime today.

Please keep praying for our little boy; he could really use some stable days for a while.  We could also use prayer for his fluid levels to remain in line, for the doctors to discover the source of the fluid, and for Jackson's kidneys (and all internal organs) to be functioning as they should.

For those of you who will read this today(Friday) please pray for my dad - as he is currently in surgery for his by-pass.  We expect it to take around 5 hours (done around 5pm) but it could take longer, and recovery will take some time.  

Thank you all again for all the love and support we've received from so many people.   We're frustrated, and are in a constant limbo of emotions, but we know that we are in good hands.  We know God cares for us, and for Jackson - and at the end of the day - that is what matters.

Gma & Gpa Terlouw - (Annie's parent's)