WRITTEN BY SHMUEL T. ADLER

 

This is Part 2 of a special supplement article L’Zchus our dear son Yehoshua’s birthday and L’Zchus Purim. The article recounts some of the amazing miracles which we experienced with Yehoshua over the past year.

5) For the first few months of Yehoshuas’ life he struggled with tolerating his feeds. He gained weight very slowly and he had major issues with digesting his food. The hospital performed several tests to figure out what exactly was wrong but they never really put their finger on it.

It reached a point when he was literally only able to tolerate a fraction of an ounce (an extremely small amount!) of food per hour. He was gaining very little weight, if any at all. The hospital was giving him something called TPN which is a fluid they deliver through an IV which helped keep him nourished.

Something had to be done about his feeding. We were left with basically two options, neither of them pleasant. One option was for the hospital to perform some type of surgery to figure out what was wrong. The other option was to have him transferred to a different hospital which specialized in GI (stomach issues). We spoke to a few askanim for advice and they were all putting tremendous pressure on us that we absolutely must have him transferred. The thought of transferring him was overwhelming; where would we transfer him?, where would we stay?, what would I do about my job?, how would the new hospital staff treat us?, will it really help to transfer him?, etc. We even brought the idea up to the doctors of the hospital where we were, and our requests basically fell on deaf ears. Meaning even once we decided to transfer it would be a difficult battle to do so. Certain askanim offered to help but their words were not backed up by much action.

(This whole episode of trying to transfer is really an entire story in and of itself).

We felt as if we were on a roller coaster ride, in which the cars shot off of their tracks, hurtling into space. We did not know what to do. We felt totally and utterly stressed and overwhelmed; at wits end. We felt as if we could not possibly deal with transferring him; but the tremendous pressure which askanim were putting on us was becoming too much to bear. Of all the askanim who we spoke only one told us we don’t need to transfer. Friends who we spoke to who had children sick in the hospital advised us as well to transfer. Feelings of terrible guilt weighed down on us; what terrible parents we must be; we have to do to what is best for our son; his life was on the line – how could we not transfer him if he wasn’t gaining weight. At the same time the idea of transferring him loomed over us like a huge mountain. It meant turning our lives upside down plus fighting a great battle with the hospital our son was in, in order to do so.

 The pressure was giving me a splitting headache from morning to night.

It finally hit us that we must ask a big Rav for advice what to do. The Rav will make the decision for us and we will follow whatever he says. We asked a Rav; for this article the reasons he told us are not important; however the Rav told us we should not transfer the baby.

It was a great relief for us to have a clear decision not to transfer.

So what do we do now?! He still wasn’t tolerating his feeds and he wasn’t gaining weight. We were still drowning in worry about what will be. We were scrambling to get in contact with as many askanim and Dr’s that we were able, to ask advice about what to do. With the great kindness of people who helped us, we were able to contact a few top GI (digestion) specialists and though they gave us whatever advice they could, they had nothing earth shattering to add.

And then G-d’s salvation came.

One of the doctors from the hospital where our son is had a brainstorm. They would increase the amount of his feeds by a fraction of an ounce, every few days. Maybe he would be able to tolerate that small increase in feeds. There was no way to know if this idea would work, but left with the alternative this was definitely worth a try. And that is what they did. Every few days they increased his feeds by a drop. And he tolerated it!! He slowly began gaining weight. That was approximately four months ago. He weighed at the time about 6 pounds. Ever since then they have increased his feeds by a drop every few days until just a few weeks ago he reached full feeds (the amount of food a baby his age is supposed to get)! It is a miracle! A few months before he would not tolerate more than a drop of food and he was not gaining weight. Now he weighs almost 14 pounds!!!

6) During this time when they began feeding the baby increasing his feeds every few days by a drop, he was still only gaining weight very slowly and he needed supplement nourishment to be given to him through an iV line (As mentioned earlier, he was getting among other things, TPN). Until he gained a lot more weight, this supplement nourishment was vital to provide him with the sustenance which he needed to stay alive. Needless to say having an IV line through with which to give him the nourishment was critical for him. In general he has “torturous veins” which means his veins are jagged and this makes it much more difficult for the medical team to insert an IV. They had had trouble inserting IV lines into his veins on previous occasions.

One day we received a phone call that the fluids running through his IV had somehow leaked out of his veins into his skin. That in and of itself was very dangerous because if not treated immediately it could potentially cause a lot of damage. The nurse noticed it right away and dealt with it immediately. This alone was a great miracle because due to the fact that the nurse noticed it right away, she was able to properly treat it and Yehoshua suffered just a bit of skin irritation for a short time after that.

What really scared us was the fact that he had lost his IV. This happened only soon after he began gaining weight and he still was very much dependent on the supplement nourishment. It was critical that he receive that nourishment. And we knew how difficult it was for them to get a new IV in. We had to hope and pray that they would succeed in inserting an IV. They tried once or twice and could not get it in. We requested that they have a nurse who previously succeeded in getting an IV in to him, try now to insert one as well. These nurses tried and they also were not successful in inserting one in.

The situation was getting really serious and our minds were threatening to panic. What were we to do?! We knew that as a last resort they would need to insert a permanent IV (called a “Broviac”) through operating. This procedure is extremely complicated with a lot of risks and we had a previous extremely negative, life-threatening experience with this procedure. We were terribly concerned to let them do this procedure again. But it seemed we may not have had any choice.

We had a meeting with Yehoshua’s doctor. The doctor told us that it may be the only option to operate and insert the Broviac. However, he told us, there was one slight possibility that they would not need to perform the operation. That option was the following. Since he had began gaining weight, though he still was not tolerating the amount of feeds he needed to sustain him maybe that would be enough. Meaning, they could try to wait a bit and see maybe over the next week or so they would be able to increase his amount of feeds so that it would just reach the minimum amount that would be adequate to sustain him. Then his feeds alone would be enough for him and he would not need the supplement nourishment. Then he would not need the IV! If after the week or so he still wasn’t tolerating enough feeds and gaining enough weight then they would have no choice but to surgically insert the Broviac. This plan was not a simple plan, because he had needed an IV for practically his whole life up until then!

The doctor added, that this whole plan had an over-all dangerous risk, that if the baby was left without an IV for a week or two and an emergency would come up for which they would need to give him medication through an IV, they would have to scramble to do an emergency surgery to insert the Broviac. All that extra time wasted may turn out to be fatal. The doctor told us that the team had to think about it and decide if they were willing to take this risk.

They decided that they would try and wait to see what happens over the next few days. We lived the next few days with baited breath! Until we realized what was happening. What happened over the next few days was amazing. Yehoshua tolerated his feeds and they were able to increase his feeds up to the point where they felt he no longer needed the supplement nourishment!! He then no longer needed an IV and there was no need to surgically insert the Broviac!! Yehoshua continued to tolerate his feeds and now he is gaining weight more steadily than ever before!!

6) At the end of the day (or the year!) there were a number of times where we felt we were in serious trouble and miraculously G-d saved us.

The Dr. (Frum doctor!) who headed the delivery team told us that when he was informed about the situation he assumed he would need a host of machines and tools to keep the baby alive, the moment the baby came out. Afterwards he told us that all he needed was to hook Yehoshua up to a ventilator (which practically all NICU babies need at first) and everything was fine. He was surprised that he did not need the other life-saving paraphernalia which he had brought along!

7) After a few months the team decided that Yehoshua’s breathing was strong enough that he did not need to be intubated (tube going all the way into his lungs to help him breath) anymore. Afterwards things came up which required him to be re-intubated once again. This repeated itself a few times, in which he was extubated (the team felt he didn’t need the tube to go directly in his lungs) and then for whatever the reason he need to be re-intubated. Each time we waited with baited breath to see how long he would need to be re-intubated. It was extremely uncomfortable for him, and if he needed intubation that meant that his breathing was requiring much more support. So it was very important to us to see that he would not need to be intubated for long. Each time the medical team told us that he would need to remain intubated for a week or two. The first time this happened and subsequently other times following, as well, Yehoshua pulled out his intubation tube himself. As frightening as it was, the team decided to leave it out and see how he managed without it. He managed fine without the tube and they left the tube out. There were very few, if any, times that he actually had to wait the full predicted time for the team to take out the tube!

We have no words to express our thanks to G-d for all the miracles which He has performed for our dear little Yehoshua. Each time we saw His hand so clearly running the show, it strengthened us and empowered us to face the subsequent challenges which we needed to experience. Our ability to see the loving hand of G-d allowed us to see so clearly that G-d is there for us and watching us every second of this journey.

“Mi She’asa Nisim La’avoseinu … Hu Yiga’al Osanu Bekarov …!”

We can’t wait for the day when our dear little (not so little anymore!) Yehoshualeh can come healthy home!

L’zchus Refua Sheleima Yehoshua Ben Nechama Aliza; L’iluy Nishmas Chaim Pinchos ben Yaakov Yitzchok